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• 04 March 2024
• Clarification 05 March 2024

Millions of research papers at risk of disappearing from the Internet

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More than one-quarter of scholarly articles are not being properly archived and preserved, a study of more than seven million digital publications suggests. The findings, published in the Journal of Librarianship and Scholarly Communication on 24 January 1 , indicate that systems to preserve papers online have failed to keep pace with the growth of research output.

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Nature 627 , 256 (2024)

doi: https://doi.org/10.1038/d41586-024-00616-5

Updates & Corrections

Clarification 05 March 2024 : The headline of this story has been edited to reflect the fact that some of these papers have not entirely disappeared from the Internet. Rather, many papers are still accessible but have not been properly archived.

Eve, M. P. J. Libr. Sch. Commun. 12 , eP16288 (2024).

Article   Google Scholar  

Laakso, M., Matthias, L. & Jahn, N. J. Assoc. Inf. Sci. Technol. 72 , 1099–1112 (2021).

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Selected Papers in Internet Research 2023. Research from the Annual Conference of the Association of Internet Researchers

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From Science to Arts, an Inevitable Decision?

The wonderful world of fungi, openmind books, scientific anniversaries, simultaneous translation technology – ever closer to reality, featured author, latest book, the impact of the internet on society: a global perspective, introduction.

The Internet is the decisive technology of the Information Age, as the electrical engine was the vector of technological transformation of the Industrial Age. This global network of computer networks, largely based nowadays on platforms of wireless communication, provides ubiquitous capacity of multimodal, interactive communication in chosen time, transcending space. The Internet is not really a new technology: its ancestor, the Arpanet, was first deployed in 1969 (Abbate 1999). But it was in the 1990s when it was privatized and released from the control of the U.S. Department of Commerce that it diffused around the world at extraordinary speed: in 1996 the first survey of Internet users counted about 40 million; in 2013 they are over 2.5 billion, with China accounting for the largest number of Internet users. Furthermore, for some time the spread of the Internet was limited by the difficulty to lay out land-based telecommunications infrastructure in the emerging countries. This has changed with the explosion of wireless communication in the early twenty-first century. Indeed, in 1991, there were about 16 million subscribers of wireless devices in the world, in 2013 they are close to 7 billion (in a planet of 7.7 billion human beings). Counting on the family and village uses of mobile phones, and taking into consideration the limited use of these devices among children under five years of age, we can say that humankind is now almost entirely connected, albeit with great levels of inequality in the bandwidth as well as in the efficiency and price of the service.

At the heart of these communication networks the Internet ensures the production, distribution, and use of digitized information in all formats. According to the study published by Martin Hilbert in Science (Hilbert and López 2011), 95 percent of all information existing in the planet is digitized and most of it is accessible on the Internet and other computer networks.

The speed and scope of the transformation of our communication environment by Internet and wireless communication has triggered all kind of utopian and dystopian perceptions around the world.

As in all moments of major technological change, people, companies, and institutions feel the depth of the change, but they are often overwhelmed by it, out of sheer ignorance of its effects.

The media aggravate the distorted perception by dwelling into scary reports on the basis of anecdotal observation and biased commentary. If there is a topic in which social sciences, in their diversity, should contribute to the full understanding of the world in which we live, it is precisely the area that has come to be named in academia as Internet Studies. Because, in fact, academic research knows a great deal on the interaction between Internet and society, on the basis of methodologically rigorous empirical research conducted in a plurality of cultural and institutional contexts. Any process of major technological change generates its own mythology. In part because it comes into practice before scientists can assess its effects and implications, so there is always a gap between social change and its understanding. For instance, media often report that intense use of the Internet increases the risk of alienation, isolation, depression, and withdrawal from society. In fact, available evidence shows that there is either no relationship or a positive cumulative relationship between the Internet use and the intensity of sociability. We observe that, overall, the more sociable people are, the more they use the Internet. And the more they use the Internet, the more they increase their sociability online and offline, their civic engagement, and the intensity of family and friendship relationships, in all cultures—with the exception of a couple of early studies of the Internet in the 1990s, corrected by their authors later (Castells 2001; Castells et al. 2007; Rainie and Wellman 2012; Center for the Digital Future 2012 et al.).

Thus, the purpose of this chapter will be to summarize some of the key research findings on the social effects of the Internet relying on the evidence provided by some of the major institutions specialized in the social study of the Internet. More specifically, I will be using the data from the world at large: the World Internet Survey conducted by the Center for the Digital Future, University of Southern California; the reports of the British Computer Society (BCS), using data from the World Values Survey of the University of Michigan; the Nielsen reports for a variety of countries; and the annual reports from the International Telecommunications Union. For data on the United States, I have used the Pew American Life and Internet Project of the Pew Institute. For the United Kingdom, the Oxford Internet Survey from the Oxford Internet Institute, University of Oxford, as well as the Virtual Society Project from the Economic and Social Science Research Council. For Spain, the Project Internet Catalonia of the Internet Interdisciplinary Institute (IN3) of the Universitat Oberta de Catalunya (UOC); the various reports on the information society from Telefónica; and from the Orange Foundation. For Portugal, the Observatório de Sociedade da Informação e do Conhecimento (OSIC) in Lisbon. I would like to emphasize that most of the data in these reports converge toward similar trends. Thus I have selected for my analysis the findings that complement and reinforce each other, offering a consistent picture of the human experience on the Internet in spite of the human diversity.

Given the aim of this publication to reach a broad audience, I will not present in this text the data supporting the analysis presented here. Instead, I am referring the interested reader to the web sources of the research organizations mentioned above, as well as to selected bibliographic references discussing the empirical foundation of the social trends reported here.

Technologies of Freedom, the Network Society, and the Culture of Autonomy

In order to fully understand the effects of the Internet on society, we should remember that technology is material culture. It is produced in a social process in a given institutional environment on the basis of the ideas, values, interests, and knowledge of their producers, both their early producers and their subsequent producers. In this process we must include the users of the technology, who appropriate and adapt the technology rather than adopting it, and by so doing they modify it and produce it in an endless process of interaction between technological production and social use. So, to assess the relevance of Internet in society we must recall the specific characteristics of Internet as a technology. Then we must place it in the context of the transformation of the overall social structure, as well as in relationship to the culture characteristic of this social structure. Indeed, we live in a new social structure, the global network society, characterized by the rise of a new culture, the culture of autonomy.

Internet is a technology of freedom, in the terms coined by Ithiel de Sola Pool in 1973, coming from a libertarian culture, paradoxically financed by the Pentagon for the benefit of scientists, engineers, and their students, with no direct military application in mind (Castells 2001). The expansion of the Internet from the mid-1990s onward resulted from the combination of three main factors:

• The technological discovery of the World Wide Web by Tim Berners-Lee and his willingness to distribute the source code to improve it by the open-source contribution of a global community of users, in continuity with the openness of the TCP/IP Internet protocols. The web keeps running under the same principle of open source. And two-thirds of web servers are operated by Apache, an open-source server program.
• Institutional change in the management of the Internet, keeping it under the loose management of the global Internet community, privatizing it, and allowing both commercial uses and cooperative uses.
• Major changes in social structure, culture, and social behavior: networking as a prevalent organizational form; individuation as the main orientation of social behavior; and the culture of autonomy as the culture of the network society.

I will elaborate on these major trends.

Our society is a network society; that is, a society constructed around personal and organizational networks powered by digital networks and communicated by the Internet. And because networks are global and know no boundaries, the network society is a global network society. This historically specific social structure resulted from the interaction between the emerging technological paradigm based on the digital revolution and some major sociocultural changes. A primary dimension of these changes is what has been labeled the rise of the Me-centered society, or, in sociological terms, the process of individuation, the decline of community understood in terms of space, work, family, and ascription in general. This is not the end of community, and not the end of place-based interaction, but there is a shift toward the reconstruction of social relationships, including strong cultural and personal ties that could be considered a form of community, on the basis of individual interests, values, and projects.

The process of individuation is not just a matter of cultural evolution, it is materially produced by the new forms of organizing economic activities, and social and political life, as I analyzed in my trilogy on the Information Age (Castells 1996–2003). It is based on the transformation of space (metropolitan life), work and economic activity (rise of the networked enterprise and networked work processes), culture and communication (shift from mass communication based on mass media to mass self-communication based on the Internet); on the crisis of the patriarchal family, with increasing autonomy of its individual members; the substitution of media politics for mass party politics; and globalization as the selective networking of places and processes throughout the planet.

But individuation does not mean isolation, or even less the end of community. Sociability is reconstructed as networked individualism and community through a quest for like-minded individuals in a process that combines online interaction with offline interaction, cyberspace and the local space. Individuation is the key process in constituting subjects (individual or collective), networking is the organizational form constructed by these subjects; this is the network society, and the form of sociability is what Rainie and Wellman (2012) conceptualized as networked individualism. Network technologies are of course the medium for this new social structure and this new culture (Papacharissi 2010).

As stated above, academic research has established that the Internet does not isolate people, nor does it reduce their sociability; it actually increases sociability, as shown by myself in my studies in Catalonia (Castells 2007), Rainie and Wellman in the United States (2012), Cardoso in Portugal (2010), and the World Internet Survey for the world at large (Center for the Digital Future 2012 et al.). Furthermore, a major study by Michael Willmott for the British Computer Society (Trajectory Partnership 2010) has shown a positive correlation, for individuals and for countries, between the frequency and intensity of the use of the Internet and the psychological indicators of personal happiness. He used global data for 35,000 people obtained from the World Wide Survey of the University of Michigan from 2005 to 2007. Controlling for other factors, the study showed that Internet use empowers people by increasing their feelings of security, personal freedom, and influence, all feelings that have a positive effect on happiness and personal well-being. The effect is particularly positive for people with lower income and who are less qualified, for people in the developing world, and for women. Age does not affect the positive relationship; it is significant for all ages. Why women? Because they are at the center of the network of their families, Internet helps them to organize their lives. Also, it helps them to overcome their isolation, particularly in patriarchal societies. The Internet also contributes to the rise of the culture of autonomy.

The key for the process of individuation is the construction of autonomy by social actors, who become subjects in the process. They do so by defining their specific projects in interaction with, but not submission to, the institutions of society. This is the case for a minority of individuals, but because of their capacity to lead and mobilize they introduce a new culture in every domain of social life: in work (entrepreneurship), in the media (the active audience), in the Internet (the creative user), in the market (the informed and proactive consumer), in education (students as informed critical thinkers, making possible the new frontier of e-learning and m-learning pedagogy), in health (the patient-centered health management system) in e-government (the informed, participatory citizen), in social movements (cultural change from the grassroots, as in feminism or environmentalism), and in politics (the independent-minded citizen able to participate in self-generated political networks).

There is increasing evidence of the direct relationship between the Internet and the rise of social autonomy. From 2002 to 2007 I directed in Catalonia one of the largest studies ever conducted in Europe on the Internet and society, based on 55,000 interviews, one-third of them face to face (IN3 2002–07). As part of this study, my collaborators and I compared the behavior of Internet users to non-Internet users in a sample of 3,000 people, representative of the population of Catalonia. Because in 2003 only about 40 percent of people were Internet users we could really compare the differences in social behavior for users and non-users, something that nowadays would be more difficult given the 79 percent penetration rate of the Internet in Catalonia. Although the data are relatively old, the findings are not, as more recent studies in other countries (particularly in Portugal) appear to confirm the observed trends. We constructed scales of autonomy in different dimensions. Only between 10 and 20 percent of the population, depending on dimensions, were in the high level of autonomy. But we focused on this active segment of the population to explore the role of the Internet in the construction of autonomy. Using factor analysis we identified six major types of autonomy based on projects of individuals according to their practices:

a) professional development b) communicative autonomy c) entrepreneurship d) autonomy of the body e) sociopolitical participation f) personal, individual autonomy

These six types of autonomous practices were statistically independent among themselves. But each one of them correlated positively with Internet use in statistically significant terms, in a self-reinforcing loop (time sequence): the more one person was autonomous, the more she/he used the web, and the more she/he used the web, the more autonomous she/he became (Castells et al. 2007). This is a major empirical finding. Because if the dominant cultural trend in our society is the search for autonomy, and if the Internet powers this search, then we are moving toward a society of assertive individuals and cultural freedom, regardless of the barriers of rigid social organizations inherited from the Industrial Age. From this Internet-based culture of autonomy have emerged a new kind of sociability, networked sociability, and a new kind of sociopolitical practice, networked social movements and networked democracy. I will now turn to the analysis of these two fundamental trends at the source of current processes of social change worldwide.

The Rise of Social Network Sites on the Internet

Since 2002 (creation of Friendster, prior to Facebook) a new socio-technical revolution has taken place on the Internet: the rise of social network sites where now all human activities are present, from personal interaction to business, to work, to culture, to communication, to social movements, and to politics.

Social Network Sites are web-based services that allow individuals to (1) construct a public or semi-public profile within a bounded system, (2) articulate a list of other users with whom they share a connection, and (3) view and traverse their list of connections and those made by others within the system.

(Boyd and Ellison 2007, 2)

Social networking uses, in time globally spent, surpassed e-mail in November 2007. It surpassed e-mail in number of users in July 2009. In terms of users it reached 1 billion by September 2010, with Facebook accounting for about half of it. In 2013 it has almost doubled, particularly because of increasing use in China, India, and Latin America. There is indeed a great diversity of social networking sites (SNS) by countries and cultures. Facebook, started for Harvard-only members in 2004, is present in most of the world, but QQ, Cyworld, and Baidu dominate in China; Orkut in Brazil; Mixi in Japan; etc. In terms of demographics, age is the main differential factor in the use of SNS, with a drop of frequency of use after 50 years of age, and particularly 65. But this is not just a teenager’s activity. The main Facebook U.S. category is in the age group 35–44, whose frequency of use of the site is higher than for younger people. Nearly 60 percent of adults in the U.S. have at least one SNS profile, 30 percent two, and 15 percent three or more. Females are as present as males, except when in a society there is a general gender gap. We observe no differences in education and class, but there is some class specialization of SNS, such as Myspace being lower than FB; LinkedIn is for professionals.

Thus, the most important activity on the Internet at this point in time goes through social networking, and SNS have become the chosen platforms for all kind of activities, not just personal friendships or chatting, but for marketing, e-commerce, education, cultural creativity, media and entertainment distribution, health applications, and sociopolitical activism. This is a significant trend for society at large. Let me explore the meaning of this trend on the basis of the still scant evidence.

Social networking sites are constructed by users themselves building on specific criteria of grouping. There is entrepreneurship in the process of creating sites, then people choose according to their interests and projects. Networks are tailored by people themselves with different levels of profiling and privacy. The key to success is not anonymity, but on the contrary, self-presentation of a real person connecting to real people (in some cases people are excluded from the SNS when they fake their identity). So, it is a self-constructed society by networking connecting to other networks. But this is not a virtual society. There is a close connection between virtual networks and networks in life at large. This is a hybrid world, a real world, not a virtual world or a segregated world.

People build networks to be with others, and to be with others they want to be with on the basis of criteria that include those people who they already know (a selected sub-segment). Most users go on the site every day. It is permanent connectivity. If we needed an answer to what happened to sociability in the Internet world, here it is:

There is a dramatic increase in sociability, but a different kind of sociability, facilitated and dynamized by permanent connectivity and social networking on the web.

Based on the time when Facebook was still releasing data (this time is now gone) we know that in 2009 users spent 500 billion minutes per month. This is not just about friendship or interpersonal communication. People do things together, share, act, exactly as in society, although the personal dimension is always there. Thus, in the U.S. 38 percent of adults share content, 21 percent remix, 14 percent blog, and this is growing exponentially, with development of technology, software, and SNS entrepreneurial initiatives. On Facebook, in 2009 the average user was connected to 60 pages, groups, and events, people interacted per month to 160 million objects (pages, groups, events), the average user created 70 pieces of content per month, and there were 25 billion pieces of content shared per month (web links, news stories, blogs posts, notes, photos). SNS are living spaces connecting all dimensions of people’s experience. This transforms culture because people share experience with a low emotional cost, while saving energy and effort. They transcend time and space, yet they produce content, set up links, and connect practices. It is a constantly networked world in every dimension of human experience. They co-evolve in permanent, multiple interaction. But they choose the terms of their co-evolution.

Thus, people live their physical lives but increasingly connect on multiple dimensions in SNS.

Paradoxically, the virtual life is more social than the physical life, now individualized by the organization of work and urban living.

But people do not live a virtual reality, indeed it is a real virtuality, since social practices, sharing, mixing, and living in society is facilitated in the virtuality, in what I called time ago the “space of flows” (Castells 1996).

Because people are increasingly at ease in the multi-textuality and multidimensionality of the web, marketers, work organizations, service agencies, government, and civil society are migrating massively to the Internet, less and less setting up alternative sites, more and more being present in the networks that people construct by themselves and for themselves, with the help of Internet social networking entrepreneurs, some of whom become billionaires in the process, actually selling freedom and the possibility of the autonomous construction of lives. This is the liberating potential of the Internet made material practice by these social networking sites. The largest of these social networking sites are usually bounded social spaces managed by a company. However, if the company tries to impede free communication it may lose many of its users, because the entry barriers in this industry are very low. A couple of technologically savvy youngsters with little capital can set up a site on the Internet and attract escapees from a more restricted Internet space, as happened to AOL and other networking sites of the first generation, and as could happen to Facebook or any other SNS if they are tempted to tinker with the rules of openness (Facebook tried to make users pay and retracted within days). So, SNS are often a business, but they are in the business of selling freedom, free expression, chosen sociability. When they tinker with this promise they risk their hollowing by net citizens migrating with their friends to more friendly virtual lands.

Perhaps the most telling expression of this new freedom is the transformation of sociopolitical practices on the Internet.

Communication Power: Mass-Self Communication and the Transformation of Politics

Power and counterpower, the foundational relationships of society, are constructed in the human mind, through the construction of meaning and the processing of information according to certain sets of values and interests (Castells 2009).

Ideological apparatuses and the mass media have been key tools of mediating communication and asserting power, and still are. But the rise of a new culture, the culture of autonomy, has found in Internet and mobile communication networks a major medium of mass self-communication and self-organization.

The key source for the social production of meaning is the process of socialized communication. I define communication as the process of sharing meaning through the exchange of information. Socialized communication is the one that exists in the public realm, that has the potential of reaching society at large. Therefore, the battle over the human mind is largely played out in the process of socialized communication. And this is particularly so in the network society, the social structure of the Information Age, which is characterized by the pervasiveness of communication networks in a multimodal hypertext.

The ongoing transformation of communication technology in the digital age extends the reach of communication media to all domains of social life in a network that is at the same time global and local, generic and customized, in an ever-changing pattern.

As a result, power relations, that is the relations that constitute the foundation of all societies, as well as the processes challenging institutionalized power relations, are increasingly shaped and decided in the communication field. Meaningful, conscious communication is what makes humans human. Thus, any major transformation in the technology and organization of communication is of utmost relevance for social change. Over the last four decades the advent of the Internet and of wireless communication has shifted the communication process in society at large from mass communication to mass self-communication. This is from a message sent from one to many with little interactivity to a system based on messages from many to many, multimodal, in chosen time, and with interactivity, so that senders are receivers and receivers are senders. And both have access to a multimodal hypertext in the web that constitutes the endlessly changing backbone of communication processes.

The transformation of communication from mass communication to mass self-communication has contributed decisively to alter the process of social change. As power relationships have always been based on the control of communication and information that feed the neural networks constitutive of the human mind, the rise of horizontal networks of communication has created a new landscape of social and political change by the process of disintermediation of the government and corporate controls over communication. This is the power of the network, as social actors build their own networks on the basis of their projects, values, and interests. The outcome of these processes is open ended and dependent on specific contexts. Freedom, in this case freedom of communicate, does not say anything on the uses of freedom in society. This is to be established by scholarly research. But we need to start from this major historical phenomenon: the building of a global communication network based on the Internet, a technology that embodies the culture of freedom that was at its source.

In the first decade of the twenty-first century there have been multiple social movements around the world that have used the Internet as their space of formation and permanent connectivity, among the movements and with society at large. These networked social movements, formed in the social networking sites on the Internet, have mobilized in the urban space and in the institutional space, inducing new forms of social movements that are the main actors of social change in the network society. Networked social movements have been particularly active since 2010, and especially in the Arab revolutions against dictatorships; in Europe and the U.S. as forms of protest against the management of the financial crisis; in Brazil; in Turkey; in Mexico; and in highly diverse institutional contexts and economic conditions. It is precisely the similarity of the movements in extremely different contexts that allows the formulation of the hypothesis that this is the pattern of social movements characteristic of the global network society. In all cases we observe the capacity of these movements for self-organization, without a central leadership, on the basis of a spontaneous emotional movement. In all cases there is a connection between Internet-based communication, mobile networks, and the mass media in different forms, feeding into each other and amplifying the movement locally and globally.

These movements take place in the context of exploitation and oppression, social tensions and social struggles; but struggles that were not able to successfully challenge the state in other instances of revolt are now powered by the tools of mass self-communication. It is not the technology that induces the movements, but without the technology (Internet and wireless communication) social movements would not take the present form of being a challenge to state power. The fact is that technology is material culture (ideas brought into the design) and the Internet materialized the culture of freedom that, as it has been documented, emerged on American campuses in the 1960s. This culture-made technology is at the source of the new wave of social movements that exemplify the depth of the global impact of the Internet in all spheres of social organization, affecting particularly power relationships, the foundation of the institutions of society. (See case studies and an analytical perspective on the interaction between Internet and networked social movements in Castells 2012.)

The Internet, as all technologies, does not produce effects by itself. Yet, it has specific effects in altering the capacity of the communication system to be organized around flows that are interactive, multimodal, asynchronous or synchronous, global or local, and from many to many, from people to people, from people to objects, and from objects to objects, increasingly relying on the semantic web. How these characteristics affect specific systems of social relationships has to be established by research, and this is what I tried to present in this text. What is clear is that without the Internet we would not have seen the large-scale development of networking as the fundamental mechanism of social structuring and social change in every domain of social life. The Internet, the World Wide Web, and a variety of networks increasingly based on wireless platforms constitute the technological infrastructure of the network society, as the electrical grid and the electrical engine were the support system for the form of social organization that we conceptualized as the industrial society. Thus, as a social construction, this technological system is open ended, as the network society is an open-ended form of social organization that conveys the best and the worse in humankind. Yet, the global network society is our society, and the understanding of its logic on the basis of the interaction between culture, organization, and technology in the formation and development of social and technological networks is a key field of research in the twenty-first century.

We can only make progress in our understanding through the cumulative effort of scholarly research. Only then we will be able to cut through the myths surrounding the key technology of our time. A digital communication technology that is already a second skin for young people, yet it continues to feed the fears and the fantasies of those who are still in charge of a society that they barely understand.

These references are in fact sources of more detailed references specific to each one of the topics analyzed in this text.

Abbate, Janet. A Social History of the Internet. Cambridge, MA: MIT Press, 1999.

Boyd, Danah M., and Nicole B. Ellison. “Social Network Sites: Definition, History, and Scholarship.” Journal of Computer-Mediated Communication 13, no. 1 (2007).

Cardoso, Gustavo, Angus Cheong, and Jeffrey Cole (eds). World Wide Internet: Changing Societies, Economies and Cultures. Macau: University of Macau Press, 2009.

Castells, Manuel. The Information Age: Economy, Society, and Culture. 3 vols. Oxford: Blackwell, 1996–2003.

———. The Internet Galaxy: Reflections on the Internet, Business, and Society. Oxford: Oxford University Press, 2001.

———. Communication Power. Oxford: Oxford University Press, 2009.

———. Networks of Outrage and Hope: Social Movements in the Internet Age. Cambridge, UK: Polity Press, 2012.

Castells, Manuel, Imma Tubella, Teresa Sancho, and Meritxell Roca.

La transición a la sociedad red. Barcelona: Ariel, 2007.

Hilbert, Martin, and Priscilla López. “The World’s Technological Capacity to Store, Communicate, and Compute Information.” Science 332, no. 6025 (April 1, 2011): pp. 60–65.

Papacharissi, Zizi, ed. The Networked Self: Identity, Community, and Culture on Social Networking Sites. Routledge, 2010.

Rainie. Lee, and Barry Wellman. Networked: The New Social Operating System. Cambridge, MA: MIT Press, 2012.

Trajectory Partnership (Michael Willmott and Paul Flatters). The Information Dividend: Why IT Makes You “Happier.” Swindon: British Informatics Society Limited, 2010. http://www.bcs.org/upload/pdf/info-dividend-full-report.pdf

Selected Web References.   Used as sources for analysis in the chapter

Agência para a Sociedade do Conhecimento. “Observatório de Sociedade da Informação e do Conhecimento (OSIC).” http://www.umic.pt/index.php?option=com_content&task=view&id=3026&Itemid=167

BCS, The Chartered Institute for IT. “Features, Press and Policy.” http://www.bcs.org/category/7307

Center for the Digital Future. The World Internet Project International Report. 4th ed. Los Angeles: USC Annenberg School, Center for the Digital Future, 2012. http://www.worldinternetproject.net/_files/_Published/_oldis/770_2012wip_report4th_ed.pdf

ESRC (Economic & Social Research Council). “Papers and Reports.” Virtual Society. http://virtualsociety.sbs.ox.ac.uk/reports.htm

Fundación Orange. “Análisis y Prospectiva: Informe eEspaña.” Fundación Orange. http://fundacionorange.es/fundacionorange/analisisprospectiva.html

Fundación Telefónica. “Informes SI.” Fundación Telefónica. http://sociedadinformacion.fundacion.telefonica.com/DYC/SHI/InformesSI/seccion=1190&idioma=es_ES.do

IN3 (Internet Interdisciplinary Institute). UOC. “Project Internet Catalonia (PIC): An Overview.” Internet Interdisciplinary Institute, 2002–07. http://www.uoc.edu/in3/pic/eng/

International Telecommunication Union. “Annual Reports.” http://www.itu.int/osg/spu/sfo/annual_reports/index.html

Nielsen Company. “Reports.” 2013. http://www.nielsen.com/us/en/reports/2013.html?tag=Category:Media+ and+Entertainment

Oxford Internet Surveys. “Publications.” http://microsites.oii.ox.ac.uk/oxis/publications

Pew Internet & American Life Project. “Social Networking.” Pew Internet. http://www.pewinternet.org/Topics/Activities-and-Pursuits/Social-Networking.aspx?typeFilter=5

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Internet use statistically associated with higher wellbeing, finds new global Oxford study

Links between internet adoption and wellbeing are likely to be positive, despite popular concerns to the contrary, according to a major new international study from researchers at the Oxford Internet Institute, part of the University of Oxford.

The study encompassed more than two million participants psychological wellbeing from 2006-2021 across 168 countries, in relation to internet use and psychological well-being across 33,792 different statistical models and subsets of data, 84.9% of associations between internet connectivity and wellbeing were positive and statistically significant. 

The study analysed data from two million individuals aged 15 to 99 in 168 countries, including Latin America, Asia, and Africa and found internet access and use was consistently associated with positive wellbeing.   

Assistant Professor Matti Vuorre, Tilburg University and Research Associate, Oxford Internet Institute and Professor Andrew Przybylski, Oxford Internet Institute carried out the study to assess how technology relates to wellbeing in parts of the world that are rarely studied.

Professor Przybylski said: 'Whilst internet technologies and platforms and their potential psychological consequences remain debated, research to date has been inconclusive and of limited geographic and demographic scope. The overwhelming majority of studies have focused on the Global North and younger people thereby ignoring the fact that the penetration of the internet has been, and continues to be, a global phenomenon'. 

'We set out to address this gap by analysing how internet access, mobile internet access and active internet use might predict psychological wellbeing on a global level across the life stages. To our knowledge, no other research has directly grappled with these issues and addressed the worldwide scope of the debate.' 

The researchers studied eight indicators of well-being: life satisfaction, daily negative and positive experiences, two indices of social well-being, physical wellbeing, community wellbeing and experiences of purpose.   

Commenting on the findings, Professor Vuorre said, “We were surprised to find a positive correlation between well-being and internet use across the majority of the thousands of models we used for our analysis.”

Whilst the associations between internet access and use for the average country was very consistently positive, the researchers did find some variation by gender and wellbeing indicators: The researchers found that 4.9% of associations linking internet use and community well-being were negative, with most of those observed among young women aged 15-24yrs.

Whilst not identified by the researchers as a causal relation, the paper notes that this specific finding is consistent with previous reports of increased cyberbullying and more negative associations between social media use and depressive symptoms among young women. 

Adds Przybylski, 'Overall we found that average associations were consistent across internet adoption predictors and wellbeing outcomes, with those who had access to or actively used the internet reporting meaningfully greater wellbeing than those who did not'.

'We hope our findings bring some greater context to the screentime debate however further work is still needed in this important area.  We urge platform providers to share their detailed data on user behaviour with social scientists working in this field for transparent and independent scientific enquiry, to enable a more comprehensive understanding of internet technologies in our daily lives.' 

In the study, the researchers examined data from the Gallup World Poll, from 2,414,294 individuals from 168 countries, from 2006-2021.  The poll assessed well-being with face-to-face and phone surveys by local interviewers in the respondents’ native languages.  The researchers applied statistical modelling techniques to the data using wellbeing indicators to test the association between internet adoption and wellbeing outcomes. 

Watch the  American Psychological Association (APA) video  highlighting the key findings from the research.

Download the paper ‘ A multiverse analysis of the associations between internet use and well-being ’ published in the journal Technology, Mind and Behaviour, American Psychological Association.

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• World J Psychiatry
• v.6(1); 2016 Mar 22

Internet addiction and problematic Internet use: A systematic review of clinical research

Correspondence to: Dr. Daria J Kuss, International Gaming Research Unit, Nottingham Trent University, Burton St, Nottingham NG1 4BU, United Kingdom. [email protected]

Telephone: +44-115-8484153 Fax: +44-115-8484153

AIM: To provide a comprehensive overview of clinical studies on the clinical picture of Internet-use related addictions from a holistic perspective. A literature search was conducted using the database Web of Science.

METHODS: Over the last 15 years, the number of Internet users has increased by 1000%, and at the same time, research on addictive Internet use has proliferated. Internet addiction has not yet been understood very well, and research on its etiology and natural history is still in its infancy. In 2013, the American Psychiatric Association included Internet Gaming Disorder in the appendix of the updated version of the Diagnostic and Statistical Manual for Mental Disorders (DSM-5) as condition that requires further research prior to official inclusion in the main manual, with important repercussions for research and treatment. To date, reviews have focused on clinical and treatment studies of Internet addiction and Internet Gaming Disorder. This arguably limits the analysis to a specific diagnosis of a potential disorder that has not yet been officially recognised in the Western world, rather than a comprehensive and inclusive investigation of Internet-use related addictions (including problematic Internet use) more generally.

RESULTS: The systematic literature review identified a total of 46 relevant studies. The included studies used clinical samples, and focused on characteristics of treatment seekers and online addiction treatment. Four main types of clinical research studies were identified, namely research involving (1) treatment seeker characteristics; (2) psychopharmacotherapy; (3) psychological therapy; and (4) combined treatment.

CONCLUSION: A consensus regarding diagnostic criteria and measures is needed to improve reliability across studies and to develop effective and efficient treatment approaches for treatment seekers.

Core tip: Internet addiction has appeared as new mental health concern. To date, reviews have focused on clinical and treatment studies of Internet addiction and Internet Gaming Disorder, limiting the analysis to a specific diagnosis of a potential disorder that has not yet been officially recognised, rather than a comprehensive investigation of Internet-use related addictions (including problematic Internet use) more generally. This systematic literature review outlines and discusses the current empirical literature base for clinical studies of Internet addiction and problematic Internet use. A total of 46 relevant studies on treatment seeker characteristics, psychopharmacotherapy, psychological therapy, and combined treatment were identified.

INTRODUCTION

Over the last 15 years, the number of Internet users has increased by 1000%[ 1 ], and at the same time, research on addictive Internet use has proliferated. Internet addiction has not yet been understood very well, and research on its etiology and natural history is still in its infancy[ 2 ]. Currently, it is estimated that between 0.8% of young individuals in Italy[ 3 ] and 8.8% of Chinese adolescents[ 4 ] are affected. The reported higher prevalence rates in China suggest Internet addiction is a serious problem in China, and the country has acknowledged Internet addiction as official disorder in 2008[ 5 ].

A comprehensive systematic review of epidemiological research of Internet addiction for the last decade[ 6 ] indicated Internet addiction is associated with various risk factors, including sociodemographic variables (including male gender, younger age, and higher family income), Internet use variables (including time spent online, using social and gaming applications), psychosocial factors (including impulsivity, neuroticism, and loneliness), and comorbid symptoms (including depression, anxiety, and psychopathology in general), suggesting these factors contribute to an increased vulnerability for developing Internet-use related problems. Despite the gradually increasing number of studies concerning Internet addiction, classification is a contentious issue as a total of 21 different assessment instruments have been developed to date, and these are currently used to identify Internet addiction in both clinical and normative populations[ 6 ]. Conceptualisations vary substantially and include criteria derived from pathological gambling, substance-related addictions and the number of problems experienced. In addition to this, the cut-off points utilised for classification differ significantly, which impedes research and cultural cross-comparisons and limits research reliability.

Increasing research efforts on Internet addiction have led the American Psychiatric Association (APA) to include Internet Gaming Disorder in the appendix of the updated version of the Diagnostic and Statistical Manual for Mental Disorders (DSM-5) in 2013 as condition that requires further research before it can be accepted for inclusion in the main manual[ 7 ]. This has resulted in researchers commencing efforts to reach an international consensus for assessing Internet Gaming Disorder using the new DSM-5 approach based on an international expert panel[ 8 ]. However, various limitations to this recently proposed “consensus” have been identified, including the lack of a representative international community of experts in the field, the voting method used to arrive at the consensus, the criteria and nosology identified, lack of critical measurement of the disorder and lack of field testing[ 9 ]. For the purpose of a comprehensive and inclusive understanding of the potential disorder, in this systematic literature review, Internet addiction will be referred to as encompassing Internet-use related addictions and problematic Internet use, including Internet Gaming Disorder. It is argued that until this concept is understood more fully (including nosology, etiology and diagnostic criteria), limiting our understanding of Internet-use related addictions to Internet gaming-related problems does neither pay sufficient respect to the affected individuals’ personal experience nor to the variety of online behaviours that can be engaged in excessively online. For example, other potential online addictions and Internet-use related disorders have been recently reviewed[ 10 ], suggesting that limiting a diagnosis to online gaming exclusively misses out many cases of individuals who experience negative consequences and significant impairment due to their Internet use-related behaviours.

For some individuals, their online behaviours are problematic and they require professional help as they cannot cope with their experiences by themselves, suggesting treatment is necessary. Based on in-depth interviews with 20 Internet addiction treatment experts from Europe and North America, Kuss and Griffiths[ 11 ] found that in inpatient and outpatient clinical settings, Internet addiction and Internet-use related problems are associated with significant impairment and distress for individuals, which have been emphasised as the criteria demarcating mental disorders[ 12 ]. This suggests that in the clinical context, Internet addiction can be viewed as mental disorder requiring professional treatment if the individual presents with significant levels of impairment. Psychotherapists treating the condition indicate the symptoms experienced by the individuals presenting for treatment appear similar to traditional substance-related addictions, including salience, mood modification, tolerance, withdrawal, conflict and relapse[ 11 ]. This view is reflected by patients who seek treatment for their excessive gaming[ 13 ].

In 2002, the South Korean government-funded National Information Society Agency has opened the first Internet addiction prevention counselling centre worldwide, and has since developed large-scale projects (including prevention, training, counselling, treatment, and policy formulation) to tackle the pervasive problem of technology overuse[ 14 ]. Across the United States and Europe, Internet addiction treatment is not funded by the government, often leaving individuals seeking help either for other primary disorders or through private organisations, although new clinical centres that specialise in treating Internet-use related problems are being developed[ 15 ]. Based on the available evidence, recent research furthermore suggests that the best approach to treating Internet addiction is an individual approach, and a combination of psychopharmacotherapy with psychotherapy appears most efficacious[ 16 ].

To date, reviews have focused on clinical and treatment studies of Internet addiction[ 16 - 19 ] and Internet Gaming Disorder[ 2 ]. This arguably limits the analysis to a specific diagnosis of a potential disorder that has not yet been officially recognised in the Western world, rather than a comprehensive and inclusive investigation of Internet-use related addictions (including problematic Internet use) more generally. Previous reviews relied on overly restrictive inclusion criteria, and this has led to ambiguities in the conceptualisation of the problem, and consequently resulted in limitations regarding both validity and reliability. In order to overcome these problems, the aim of this literature review is to provide a comprehensive overview of clinical studies on the more inclusive clinical picture of Internet-use related addictions from a holistic perspective.

MATERIALS AND METHODS

Between July and August 2015, a literature search was conducted using the database Web of Science. This database is more comprehensive than other commonly used databases, such as PsycINFO or PubMed because it includes various multidisciplinary databases. The following search terms (and their derivatives) were entered: “Internet addict*”, “Internet gaming addiction”, “gaming addiction”, “Internet Gaming Disorder”, “compuls* Internet use”, “compuls* gam*”, “pathological Internet use”, “excessive internet use”, or “problematic Internet use”, and “clinic*”, “diagnos*”, “treat*, “therap*”, or “patient*”. Studies were selected based on the following inclusion criteria. Studies had to (1) contain quantitative empirical data; (2) have been published after 2000; (3) include clinical samples and/or clinical interventions for Internet and/or gaming addiction; (4) provide a full-text article (rather than a conference abstract); and (5) be published in English, German, Polish, Spanish, Portuguese, or French as the present authors speak these languages. The initial search yielded 152 results. Following a thorough inspection of the articles’ titles and abstracts, the articles that did not meet the inclusion criteria were excluded. The search strategy is presented in Figure ​ Figure1 1 .

Flow chart displaying the search process.

Additional articles were identified through searching the citations in the literature selected, resulting in the inclusion of another eight studies[ 20 - 27 ].

A total of 46 studies met the inclusion criteria. These studies are presented in Table ​ Table1. 1 . The included studies used clinical samples, and focused on characteristics of treatment seekers and online addiction treatment. Four main types of clinical research studies were identified, namely research involving (1) treatment seeker characteristics; (2) psychopharmacotherapy; (3) psychological therapy; and (4) combined treatment. The results section will outline each of these.

Clinical studies reviewed

AD: Alcohol dependence; ADHD: Attention-deficit/hyperactivity disorder; AICA-C: Checklist for the assessment of internet and computer game addiction; AICA-S: Scale for the assessment of internet and computer game addiction; AUD: Alcohol use disorder; AUDIT-K: Korean version of alcohol use disorder identification test; BAI: Beck anxiety inventory; BDI: Beck depression inventory; BDI-II: Beck depression inventory II; BIS: Barratt impulsiveness scale; BIS-11: Barratt’s impulsivity scale-11; BSD: Bipolar spectrum disorders; BSQ: Body sensations questionnaire; CAARS:S: Conners’ adult ADHD rating scales self; CB: Compulsive buying; CBS: Compulsive buying scale; CBT: Cognitive behavioural therapy; CBT-IA: Cognitive-behavioural therapy for internet addiction; CDR: Centre for dependence rehabilitation; CDS-2: Cambridge depersonalization scale; C-FAI: Chinese family assessment instrument; CGI: Clinical global impression scale; CGI-I: Clinical global impressions-improvement scale; CIAS: Chen internet addiction scale; CIU: Compulsive internet use; CSEI: Coopersmith’s self-esteem inventory; CT: Comprehensive therapy; DAPP: Dimensional assessment of personality pathology-short form; DC-IA-C: Diagnostic criteria of internet addiction for college students; DES: Dissociative experience scale; DSQ: Defense style questionnaire; EA: Electroacupuncture; EEG: Electroencephalogram; ED: Eating disorders; EDI-2: Eating disorder inventory 2; EDU: Education for internet use; EOP: Excessive online game play; EPI: Echo-planar image; ERP: Event-related potentials; GAD-7: Seven-item generalized anxiety disorder; GPIU: Generalised pathological internet use; GSE: General self-efficacy scale; HC: Healthy controls; IA: Internet addiction; IAD: Internet addiction disorder; IAG: Internet video game addicts; IAT: Internet addiction test; IC-IUD: Impulsive-compulsive internet usage disorder; IGD: Internet gaming disorder; IIP-D: Inventory of interpersonal problems; IRSQ: Interpersonal relationship styles questionnaire; ITC: Inferior temporal cortex; K-IAS: K-internet addiction scale; MDD: Major depressive disorder; MDQ: Mood disorder questionnaire; MET: Motivational enhancement therapy; MFGT: Mechanism of multi-family group therapy; MI: Motivational interviewing; MINI: Mini international neuropsychiatric interview; MMN: Mismatch negativity; MRI: Mental research institute; NC: Normal controls; NEO-FFI: NEO five factors inventory; NEO-PI-R: NEO personality inventory-revised; OCD: Obsessive compulsive disorder; OCS: Online cognitions scale; PA: Panic and agoraphobia scale; PCC: Posterior cingulate cortex; PD: Panic disorder; PG: Problematic gambling disorder; PHQ: Patient health questionnaire; PI: Psycho-intervention; POGP: Problematic online game play; QGU-B: Questionnaire on gaming urge-belief; ReHo: Regional homogeneity; SADQ: Severity of alcohol dependence questionnaire; SARP: Substance addiction recovery program; SCARED: Screen for child anxiety related emotional disorders; SCID: Structured clinical interview for DSM-IV; SCID-IV: Structured clinical interview for DSM-IV-patient version; SCL: Symptom checklist; SCL-90R: Symptom checklist 90-revised; SG: Survey group; SOC: Sense of coherence scale; STAXI-K: State-trait anger expression inventory; STG: Superior temporal gyrus; TG: Training group; YBOCS: Yale-brown obsessive compulsive severity scale; YIAS: Young’s internet addiction scale; YIAS-K: Young's internet addiction scale, korean version; ZKPQ: Zuckermann-kuhlman personality questionnaire.

Treatment seeker characteristics

A total of 25 studies[ 19 , 26 , 27 , 32 , 43 , 50 , 62 , 72 , 78 , 79 , 93 , 106 , 109 , 111 , 112 , 118 , 124 , 130 , 133 , 143 , 146 , 163 , 164 , 188 , 204 ] investigated the characteristics of treatment seekers. Here, treatment seekers are defined as individuals seeking professional support for online addiction-related problems. The following paragraphs will outline the treatment seekers’ sociodemographic characteristics, Internet/gaming addiction measures used to ascertain diagnostic status in the respective studies, differential diagnoses and comorbidities.

Sociodemographic characteristics

In the included studies, sample sizes ranged from a case study of a male in Australia presenting with the problem of generalised pathological Internet use[ 112 ] to a total of 1826 clients sampled from 15 inpatient alcohol addiction rehabilitation centres in Germany, of which 71 also presented with Internet addiction and were then compared to a control group of 58 patients treated for alcohol addiction only[ 188 ]. Ages ranged from 16 years[ 112 ] to a mean age of 30.5 years[ 72 ]. The majority of studies used male participants, with one study using female participants only[ 50 ]. Most studies included individuals seeking treatment for Internet addiction and/or problematic Internet use in specialised inpatient and outpatient treatment centres. A number of studies included particular samples, such as individuals sampled via phone consultations ( i.e ., including 86% relatives of the affected individuals)[ 43 ], patients sampled in alcohol rehabilitation centres[ 130 ], patients diagnosed with obsessive compulsive disorder (OCD)[ 46 ], and female patients treated for eating disorders[ 50 ].

Treatment seekers were sampled from various continents. Within Europe, samples included treatment seekers in Germany[ 43 , 78 , 124 , 130 , 133 , 164 , 188 , 197 ], The Netherlands[ 50 ], Italy[ 26 , 27 , 32 ], and Greece[ 79 ]. In North America, a Canadian sample was included[ 72 ]. In South America, samples included individuals from Perú[ 62 ], Puerto Rico[ 118 ], and Brazil[ 139 ]. In Western Asia, Turkish individuals were sampled in two studies[ 143 , 146 ], whereas in East Asia, participants were from China[ 163 , 204 ], South Korea[ 93 , 106 , 109 ], and Taiwan[ 113 ]. One case study included an Australian adolescent[ 112 ].

Internet/gaming addiction

Internet and/or gaming addiction were measured with a number of different psychometric tools in the included studies, sometimes combined with structured clinical interviews. Clinical interviews were explicitly mentioned in the reports of eight studies[ 32 , 50 , 62 , 93 , 106 , 109 , 164 , 204 ], and these consisted mostly of the Structured Clinical Interview for DSM-IV[ 64 ], a semi-structured interview for DSM-IV Axis I diagnoses for mental disorders.

In terms of psychometric measures, in the majority of studies, Young’s popular Internet Addiction Test[ 48 ], the IAT, was used[ 26 , 32 , 72 , 93 , 106 , 109 , 118 , 143 , 146 ]. The IAT is a 20-item self-report scale that measures the extent of Internet addiction based on criteria for substance dependence and pathological gambling[ 51 ], and includes loss of control, neglecting everyday life, relationships and alternative recreational activities, behavioural and cognitive salience, negative consequences, escapism/mood modification, and deception. Significant problems due to Internet use are identified if individuals score between 70-100 on the test, and frequent problems when they score between 40-69[ 48 ]. However, previous research has suggested that across studies, different cut-off scores for the IAT have been used to classify individuals[ 6 ], impairing comparisons across studies.

Another popular measure appeared to be the Assessment of Internet and Computer Game Addiction Scale (AICA-S)[ 44 , 194 ], which was used in seven studies[ 43 , 78 , 124 , 130 , 133 , 188 , 197 ]. The AICA-S is a 16-item scale and includes questions about the frequency of specific Internet usage, associated negative consequences and the extent to which use is pathological from a diagnostic point of view. Fourteen out of the total sixteen main questions are used to calculate a clinical score, and to distinguish normal from potentially addictive use[ 211 ].

Other measures included the Compulsive Internet Use Scale (CIUS)[ 55 ], a 14-item unidimensional self-report questionnaire including loss of control, preoccupation (cognitive and behavioural), withdrawal symptoms, coping/mood modification, and conflict (inter- and intrapersonal). The CIUS classification is based on the DSM-IV TR diagnoses for substance dependence and pathological gambling[ 12 ], and was used in one study[ 50 ]. Moreover, in one study[ 79 ], the Online Cognitions Scale was used[ 80 ], which is a 36-item questionnaire that measures cognitions related to problematic Internet use, and includes subscales on loneliness/depression, diminished impulse control, social comfort, and distraction. In another study[ 113 ], Chen’s Internet Addiction Scale[ 117 ] was administered, which is a 26-item self-report measure of core Internet addiction symptoms, including tolerance, compulsive use, withdrawal, and related problems ( i.e ., negative impact on social activities, interpersonal relationships, physical condition, and time management). Another study[ 164 ] used the Internet Addiction Scale[ 212 ], as well as a combination of Young’s[ 213 ] and Beard’s[ 66 ] Internet addiction criteria, including preoccupation, tolerance, loss of control, withdrawal, overall impairment, deception, and escapism[ 164 ]. The latter was also used in another study[ 204 ].

A different approach was taken by Tao et al[ 163 ], who intended to develop diagnostic criteria for Internet Addiction Disorder (IAD) and to evaluate the validity of these criteria. Accordingly, in order to be diagnosed with IAD, patients had to fulfil the following criteria: The presence of preoccupation and withdrawal (combined with at least one of the following: Tolerance, lack of control, continued excessive use despite knowledge of negative effects/affects, loss of interests excluding the Internet, and Internet use to escape or relieve a dysphoric mood). In addition to this, clinically significant impairment had to be identified ( i.e ., functional and psychosocial impairment), and the problematic behaviour had to last a minimum of three months, with at least six hours of non-essential Internet use a day. This study has been used as a basis for the APA’s research classification of Internet Gaming Disorder in the DSM-5.

As this section demonstrates, a wide variety of measurements have been applied in order to ascertain Internet or Internet-use related addiction, sometimes involving an expert assessment by an experienced professional. As has been stated in previous research[ 6 ], no gold standard exists to measure Internet addiction with high sensitivity and specificity, which is exacerbated by the use of different cut-off points on the same measures across studies. To mitigate this diagnostic conundrum, a diagnosis of Internet addiction would significantly benefit from including a structured clinical interview administered by a trained professional[ 214 ], and this would help eliminating false positives and false negatives in the context of diagnosis.

Differential diagnoses/comorbidities

A number of studies investigated differential diagnoses and/or comorbidity of Internet addiction and other psychopathology. In terms of assessing potential comorbidities, the Structured Clinical Interview for DSM-IV mental disorders[ 64 ] was used by five studies[ 32 , 50 , 93 , 106 , 164 ]. Psychopathological symptomatology was also assessed using the Symptom-Checklist, SCL-90-R[ 125 , 191 ] and the Chinese version of the Mini International Neuropsychiatric Interview[ 115 ]. Personality disorders were identified by using the Dimensional Assessment of Personality Pathology-Short Form[ 58 , 59 ]. Other addiction-related assessments included alcohol and drug addiction measured with the DÉBA[ 76 ], the Alcohol Use Disorder Identification Test-Korean version[ 95 ], and the Severity of Alcohol Dependence Questionnaire[ 205 ], as well as shopping addiction, assessed via the Compulsive Buying Scale[ 54 ]. The presence of eating disorders was assessed using the Eating Disorder Inventory 2[ 52 , 53 ]. Mood disorders were assessed using the Hamilton Rating Scale for Depression[ 39 ], Beck’s Depression Inventory[ 132 ], and the Mood Disorder Questionnaire[ 198 ]. Levels of anxiety were measured with the Hamilton Rating Scale for Anxiety[ 40 ], Beck’s Anxiety Inventory[ 74 ], and the Generalized Anxiety Disorder scale (GAD-7)[ 127 ]. Symptoms of Attention Deficit Hyperactivity Disorder (ADHD) were investigated by means of Conners’ Adult ADHD Rating Scales Self (CAARS:S)[ 42 ]. Finally, dissociation and depersonalisation were measured using the Dissociative Experiences Scale[ 34 ] and the Cambridge Depersonalization Scale[ 128 ].

The results of comorbidity and differential diagnosis analyses revealed the following. Of 50 adult outpatients self-referred for their Internet overuse, 14% presented with comorbid ADHD, 7% hypomania, 15% GAD, 15% social anxiety disorder, 7% dysthymia, 7% obsessive compulsive personality disorder, 14% borderline personality disorder, 7% avoidant personality disorder, and 2% binge eating disorder[ 32 ]. Higher frequencies of comorbid psychopathology were reported in a sample of 30 male patients with Internet gaming addiction[ 62 ], namely 40% antisocial personality traits, 56.7% affective disorders (30% major depression and 26.7% dysthymia), 26.7% other addictions (13.3% gambling, 10% alcohol, 10% marihuana, 6.7% nicotine and 3.3% cocaine addiction), and 16.7% antisocial disorders (13.3% ADHD, social phobia 10% and 3.3% dysmorphic corporal disorder). Generally smaller prevalence rates were reported in a sample of 57 Internet addiction treatment seekers in Canada[ 72 ]: 3.5% presented with comorbid depression and 7.5% with anxiety.

Half of a sample of 50 students with Internet addiction[ 79 ] presented with a comorbidity of another Axis I disorder (10% with major depression, 5% with dysthymia and psychotic disorders, respectively). This finding was corroborated by another study of 290 male treatment seekers, half of whom met criteria for another psychiatric disorder[ 124 ]. In addition to this, of the former sample, 38% presented with a concurrent Axis II personality disorder (22% with narcissistic, and 10% with borderline disorder, respectively)[ 79 ]. Significantly higher levels of depression and dissociation were furthermore found in a sample of 25 patients with Internet addiction as compared to a matched healthy control group[ 164 ]. Moreover, relative to a control group of male patients treated for alcohol addiction, 71 male patients with alcohol addiction and comorbid Internet addiction presented with higher levels of depression and obsessive-compulsive symptoms[ 188 ]. Furthermore, another study[ 197 ] including 368 Internet addiction treatment seekers showed that 30.9% met the diagnostic criteria for bipolar spectrum disorders, and this study also evidenced generally increased psychopathological symptomatology (including substance use disorders, affective and personality disorders). Finally, significant positive correlations were reported between compulsive buying and compulsive Internet use, as 11.7% of a sample of 60 female patients displaying patterns of compulsive buying also presented with addictive Internet use. This study reported no differences between individuals presenting with different types of eating disorders regarding compulsive Internet use[ 50 ].

Moreover, patients with Internet addiction and patients with pathological gambling received higher scores on depression, anxiety[ 26 , 27 ], and lower scores on global functioning relative to healthy controls, used impulsive coping strategies, and experienced more socio-emotional impairment. Additionally, patients with Internet addiction differed from patients with pathological gambling in that the former experienced higher mental and behavioural disengagement, which was found to be associated with interpersonal impairments[ 26 ].

Overall, the presence of comorbidities for Internet-use related addiction in the clinical context appears to be the norm rather than an exception. Individuals seeking treatment for their Internet overuse frequently present with mood and anxiety disorders, and other impulse-control and addictive disorders appear common. This indicates Internet addiction treatment may benefit from therapeutic approaches that combine evidence-based treatments for co-occurring disorders in order to increase treatment efficacy and acceptability for the patient.

Psychopharmacotherapy

In five studies, psychopharmacotherapy[ 20 , 22 , 24 , 28 , 46 ] for online addictions was used. Atmaca[ 28 ] reported the case of a 23-year-old male 4 th year medical student who presented with the problems of problematic Internet use and anxiety. The patient was treated with a combination of selective serotonine reuptake inhibitors (SSRI) and antipsychotic medication. The antidepressant citalopram was administered at a dose of 20 mg/d and was increased to 40 mg/d within the period of a week, which was continued for six weeks. Subsequently, quetiapine (an atypical antipsychotic typically used for schizophrenia spectrum disorders) was added to the treatment, starting with a dose of 50 mg/d, which was increased to 200 mg/d within four days. The treatment resulted in decreased Internet addiction as measured with the Y-BOCS[ 30 ] modified for Internet use, decreased non-essential and essential Internet use, and improved control over Internet use. The improvements persisted until four-month follow up.

Bipeta et al[ 46 ] compared 34 control subjects with or without Internet addiction assessed via Young’s Diagnostic Questionnaire[ 48 ] with patients with pure OCD with or without Internet addiction (mean age = 27 years, SD = 6.5 years). OCD patients were treated with standard pharmacological treatment for OCD (treatment as usual) for one year, received the benzodiazepine clonazepam (often used in the treatment of anxiety disorders), which was tapered off in three weeks, an SSRI or the tricyclic antidepressant clomipramine for 12 mo. The individuals with Internet addiction in the OCD group received the following doses of medication: Five patients received 150-200 mg fluvoxamine/d, four received 150-200 mg sertraline/d, one received 60 mg fluoxetine/d, and the final one received 200 mg clomipramine/d. In the OCD group that included individuals who were not addicted to using the Internet, the following doses of medication were administered: Eight patients received 150-300 mg fluvoxamine/d, five received 100-200 mg sertraline/d, eleven received 40-80 mg fluoxetine/d, and three received 150-200 mg clomipramine/d. Overall, the OCD treatment improved scores for both OCD and Internet addiction, while only two of the eleven OCD patients still fulfilled Internet addiction criteria after twelve months of treatment[ 46 ].

Dell’Osso et al[ 20 ] assessed the safety and efficacy of the antidepressant SSRI escitalopram (typically used for mood disorders) in 19 adult patients (12 men, mean age = 38.5, SD = 12.0 years) who presented with the problem of impulsive-compulsive Internet usage disorder assessed via the YBOCS[ 30 ], modified for Internet use. The trial consisted of a total of 19 wk, composed of a ten week treatment phase in which escitalopram was administered starting with 10 mg/d, and increased and maintained at 20 mg/d for 10 wk, and subsequent nine weeks of a randomised double-blind placebo controlled trial with or without administration of escitalopram at previous dosages. The treatment phase resulted in a significant decrease in Internet use. However, there were no differences in treatment effect between the treatment and placebo group following the second stage of the study. The authors also note that the group treated with escitalopram experienced negative side effects, including fatigue and sexual side effects, whereas side effects did not occur in the placebo group[ 20 ].

Han et al[ 26 ] used a controlled trial to test the effects of the antidepressant bupropion sustained release treatment (with a dose of 150 mg/d for the first week and 300 mg/d for five subsequent weeks) on the brain activity of eleven Internet video game addicts (mean age = 21.5, SD = 5.6 years), assessed via Young’s Internet Addiction Scale[ 216 ]. The results indicated that the administered psychopharmacological treatment provided successful results for the video game addiction group, as it decreased craving, playing time, and cue-induced brain activity. These authors[ 22 ] also used the central nervous system stimulant concerta (methylphenidate commonly used for ADHD) in 62 video game playing children with ADHD (52 males, mean age = 9.3, SD = 2.2 years) who had not previously been given medication. Internet addiction was assessed using the Korean version of Young’s Internet Addiction Scale[ 87 ]. The initial concerta dosage was 18 mg/d, with the maintenance dosage being individually adjusted based on the respective children’s clinical symptoms and weight. Following treatment, Internet addiction and Internet use significantly decreased, as did ADHD symptoms and omission errors in a Visual Continuous Performance Test[ 22 ].

Taken together, the studies including psychopharmacological treatment for Internet addiction and/or gaming addiction showed positive effects in decreasing Internet addiction symptomatology and Internet/gaming use times. In the few studies conducted, antidepressant medication has been used most, suggesting mood disorders may be comorbid with Internet use addiction. The research also indicated that if other (primary or secondary) disorders are present (specifically, OCD and ADHD), medication typically used to treat these disorders is also effective in reducing Internet addiction-related problems.

Psychological therapy

Ten studies[ 23 , 65 , 86 , 119 , 136 , 149 , 174 , 201 - 203 ] described some form of psychological therapy for treating Internet addiction. The majority of psychological therapies used an individual approach, which was applied to outpatients, apart from three studies that used group therapy approaches[ 23 , 65 , 119 , 136 , 149 ].

The most common approach used to treat Internet addiction was Cognitive Behavioural Therapy (CBT)[ 86 , 202 ]. This approach was usually individualised (apart from one study which used a group approach[ 65 ]). A further study used a combination of individualised and group therapy, namely Short-Term Treatment for Internet and Computer Game Addiction[ 192 ]. The typical CBT programme was administered for the duration of a few months, ranging from eight sessions[ 65 ] to 28 sessions, which included both group and individual sessions[ 192 ], and sessions lasted between one[ 86 ] and two hours[ 65 ]. The topics covered with patients in these sessions were: (1) identification of the Internet application associated with symptoms of addiction; (2) control issues ( e.g ., examining the self, feelings, impulsivity, and the relation between the individual and the Internet to self-manage and self-restrain Internet use); (3) principles of healthy communication, namely interpersonal communication, such as between parent-children[ 65 ], and sharing success stories[ 86 ]; (4) Internet awareness (with regards to relationships established and developed through the Internet, and dealing with online content); (5) cessation techniques applied to the Internet ( e.g ., recognizing the addictive behaviour and discontinuing it); and (6) additional elements ( e.g ., college career planning, covering underlying factors contributing to Internet abuse, such as marital discord, job burnout, problems with co-workers, or academic problems). In general, CBT followed a number of stages, including team building or a probatory stage to review sessions or stabilization and relapse prevention. All sessions were run by therapists[ 119 , 192 ] or psychiatrists[ 86 ] who were supporting adults, apart from one case that involved children and adolescents[ 65 ].

The treatment outcomes were measured through scores on a number of psychometric scales covering excessive Internet use, including the Internet Overuse Self-Rating Scale[ 67 , 68 ], the Adolescent Pathological Internet Use Scale[ 120 ], the Internet Addiction Diagnostic Questionnaire[ 48 ], and the assessment of emotional, cognitive and behavioural symptoms. The following emotional skills and problems were measured in some studies. Anxiety was assessed using the Screen for Child Anxiety Related Emotional Disorders[ 71 ] and self-esteem was measured with Coopersmith’s Self-Esteem Inventory[ 103 ]. Cognitive skills covered were diverse, and measures included the Online Cognition Scale (OCS)[ 80 ], and the Time Management Disposition Scale[ 69 ]. The behavioural characteristics related to Internet addiction primarily concerned the individual, but also included their peer and family relationships, and were measured using the Chinese version of the Strength and Difficulties Questionnaire[ 70 ], and the Parent-Child Communication Scale[ 122 ]. Only one study[ 86 ] did not make use of questionnaires because it was a neuropsychological and electrophysiological study conducted using an event-related potential approach, focused on cognitive function by detecting a P300 component. The results of this study indicated there was a deficit in cognitive functioning in Internet addicts, which is a finding that has also been observed in other addictive disorders[ 215 ].

Four of the included group therapy approaches (out of five studies) included Internet addicts and family groups treated simultaneously. These included (1) a CBT modality called “multimodal school-based group” (MSBG)[ 65 ]; (2) a “multi-family group therapy” (MFGT), which was used for treating Internet addiction for the first time[ 119 ]; (3) a traditional family therapy for a young adult addicted to using the Internet[ 136 ]; and (4) a “multi-level intervention model” that is usually applied to substance abuse, which included family counselling and peer support groups[ 149 ].

The psychotherapeutic MSBG approach was applied in a school setting and involved students, parents and teachers. The group of Internet addicts were students treated using classical CBT in a group ranging from six to ten participants. The students’ parents were also administered cognitive behavioural training to recognize their children’s Internet addiction (through children’s feeling states, communication and solving-problem skills in the family, and through controlling the parents’ own feelings and behaviours to manage their children’s excessive Internet use). Teachers were provided psychoeducation, which was delivered by means of workshops in didactic teaching, analysis and discussion, with the purpose of recognising and treating Internet addiction in students, and of supporting their parents.

MFGT is a new psychotherapy approach for adolescent Internet addicts[ 119 ]. This intervention provides therapeutic groups for both adults (parents) and adolescents (Internet addicts), and the aim is to provide peer support, allowing transferential reactions, engagement with the treatment and promoting family cohesion. The main goal of this form of psychotherapy is to reduce Internet addiction whilst improving parent-adolescent communication and closeness, and to fulfil the family members’ psychological needs, rather than these needs being fulfilled by Internet use. Altogether, six active sessions were used, with a subsequent three-month follow-up to target potential relapse and discuss new issues and solutions to maintain the effectiveness of the intervention. Each of the sessions lasted for two hours and included five parts: a warm-up exercise, feedback on homework from the last session, a main structured activity, a brief summary and the family assignment. The topics treated per session were: Understanding a family with the problem of excessive Internet use (session 1), parent-adolescent communication skills training (session 2), parent-adolescent communication practices related to the problem (sessions 2 and 3), parent-adolescent relationship building skills training (session 4), associations between psychological needs and Internet use, how to satisfy the unfulfilled need in the family relationships (session 5), and setting up healthy expectations for the family system (session 6).

The classical family therapy approach used in one study[ 136 ] was based on Bowen’s[ 216 ] family system theory, which focused on the distinction of the self-inside from the self within the family constellation, and was based on an extensive analysis of family-of-origin problems and communication patterns. The treatment was focused on current interactions and changes in behaviour in the family system[ 217 ] to modify the family’s communication method by changing behaviours that maintain problematic Internet use, and coping with Internet overuse related problems. The therapy focused on an undesirable online behaviour and replacing it with a healthy behaviour, which would simultaneously induce a change in the family relationships. The intervention lasted three months and included 15 sessions. It treated emotional problems to enhance control over Internet use, and included functional and emotional expression to solve interpersonal relationship problems associated with Internet addiction.

The multi-level intervention model included an individual-based counselling approach with motivational interviewing (MI), complementary techniques, and traditional family-based counselling[ 149 ]. It consisted of six phases, lasting between 15 and 19 mo. The phases included (1) emphasising controlled and healthy Internet use; (2) promoting understanding of the change process through different stages from pre-contemplation to relapse, (3) using the MI model[ 218 ] for Internet addiction; (4) adopting a family perspective by using a systemic approach; (5) applying a multi-level counselling model including the patient, his/her family and his/her peers; and (6) using individual and group therapy to facilitate the intervention.

The only group approach that did not include a family intervention was the R/T group counselling programme, which specifically addressed Internet addiction[ 23 ]. It consisted of ten group sessions (two per week) within the period of one month, which varied in length between one and 1.5 h. Accredited specialists provided this intervention for university students. The content included an introduction to the therapy goal, teaching, activities, homework assignment and sharing. Each session furthermore included four sections: The purpose, materials ( e.g ., blank paper, topic-oriented games, posters, videos), strategies ( e.g ., discussion topics, homework assignments) and session evaluation for both the individual and their family, in order to assess whether the aim of the sessions had been achieved.

Overall, the psychological studies which included a control group to compare the effect of the interventions achieved varying results, impeding a general analysis of psychotherapy impact. Du et al[ 65 ] did not find significant differences between experimental and control groups in the post-test measure of Internet overuse, although the intervention group improved their time management (efficacy and time control) and other skills (emotional symptoms, conduct problems, hyperactivity, peer relationships and prosocial behaviours) significantly, and this was maintained until a six-month follow-up. Other comparative findings included a longer P300 component duration in Internet addicts treated by CBT compared to healthy controls[ 86 ]. However, the amplitudes were similar in both groups. Moreover, although Internet addiction symptoms were reduced after treatment in the experimental group[ 149 ], this was not the case for the group’s scores on beliefs and behaviours related to Internet use and psychological well-being, and there was only a small improvement in parental monitoring and functioning following treatment.

Only two studies (out of four experimental studies) showed a clear effectiveness of psychological therapy, and both of these used a group approach. Kim[ 23 ] used a quasi-experimental design and an intervention with a group psychotherapy approach, and found a significant reduction in Internet addiction and significantly higher self-esteem in the experimental group compared to the control group. Liu et al[ 119 ] found that their MFGT approach was effective in three aspects. It resulted in a significant reduction of time spent online (reduced by half in comparison to the controls), a decrease in the Internet addiction measure, and, from the parents’ perspective, more satisfaction regarding their child’s online behaviours. Moreover, the most important factor to reduce Internet addiction in this study was found to be the parent-adolescent relationship.

Combined therapy

Six studies used combined therapy to treat Internet addiction, consisting of some form of psychological treatment in combination with one of the following: Other psychological therapies[ 138 , 180 ], pharmacotherapy[ 21 , 25 , 139 ] or electroacupuncture therapy[ 221 ].

CBT was the most frequently applied psychological therapy to treat Internet addiction. Subsequently, add-ons to the CBT approach included in the identified studies will be elaborated on. Motivational Enhancement Therapy (MET) was developed by Poddar et al[ 138 ] and was tested in the context of treating IGD. This MET-CBT approach consisted of a series of stages: (1) a contemplation stage ( i.e ., initial sessions of rapport building, a detailed interview and case formulation); (2) a preparation stage ( i.e ., sessions delivered in an empathetic atmosphere to emphasise psychoeducation, including managing physiological and emotional arousal through relaxation techniques, and a cost-benefit analysis of game addiction); and (3) a contract stage with the patient, a parent and the therapist ( i.e ., behaviour modification of gaming, reducing time spent online and promoting healthy activities). By applying these stages, a reduction of IGD and online gaming was achieved, and school performance was improved.

Another case study[ 139 ] combined CBT with psychopharmacotherapy [ i.e ., administering clonazepam (a benzodiazepine typically used to treat anxiety disorders) and sertraline (an SSRI antidepressant)] to treat Internet addiction. The intervention lasted for three months, and consisted of the following. The CBT approach aimed to support self-recognition and modify and restructure feelings and dysfunctional cognitions related to Internet use, with the goal to prevent relapse. CBT was administered for ten weekly sessions to teach the patient to handle her anxiety and other symptoms related to her Internet use (in this case panic and obsessive symptomatology, which was comorbid to her Internet addiction). Clonazepam (0.5 mg) and sertraline (50 mg) were also administrated once daily. The applied treatment proved effective for reducing both anxiety and Internet addiction.

A new treatment approach to treat Internet addiction combined CBT and MI with an on-the-job Lifestyle Training programme[ 180 ]. Treatment was delivered by qualified therapists who were supervised by a senior therapist for both main psychological therapies. The treatment consisted of eliciting and strengthening the motivation to change, choosing a treatment goal, gaining self-control, preventing relapse, and coping skills training. Ten outpatient sessions of 45 min were used, and seven of these took place within a period of 2.5 mo. The remaining sessions were optional and were administered as a follow-up within 3 mo. Each of the sessions had a fixed format: (1) introduction; (2) evaluation of current status; (3) discussing homework; (4) explaining the theme of the day; (5) practicing a skill; (6) receiving homework; and (7) closing the session. This study was the only study that provided three perspectives for data collection: The patients’, the therapists’ and the researchers’ perspectives. This intervention, which is commonly used for other addictive disorders, was found to work well for Internet addiction as it reduced Internet use, increased social contacts, provided a daily structure, and encouraged alternative uses of free time and positive beliefs.

Moreover, CBT was most frequently used in combination with a psychopharmacological treatment, such as administering bupropion. The reason to select this medication is because a proportion of patients with major depressive disorder (MDD) are also excessive online gamers, and this drug has been previously evaluated as potential treatment for MDD and other drug-addictions. Recently, its effectiveness has been tested and confirmed experimentally[ 21 , 25 ]. Han and Renshaw[ 21 ] tested this combined treatment in Chinese male adolescent and adult patients with mood disorders and online gaming addiction, and treated them with bupropion sustained release (from 150 mg/d until 300 mg/d during 8 wk) and a psychological intervention ( i.e ., education for Internet use). The treatment resulted in significantly decreased depression and Internet addiction levels, and time spent playing online games compared with the control group. At follow-up ( i.e ., four weeks post treatment), the reduction in gaming hours and level of Internet addiction was maintained, while the depression recurred.

Similarly, Kim et al[ 25 ] tested the effectiveness of CBT in an active treatment group vs a control group who did not receive CBT in Korean male adolescent patients with MMD and online gaming addiction. Both groups were treated using the same levels of bupropion. Following treatment, Internet addiction was significantly reduced in the CBT group and other measures showed improvement ( e.g ., anxiety and life satisfaction), while depression severity did not change. These findings were maintained at follow-up. Therefore, the combination of psychotherapy with bupropion is effective in MDD patients with online gaming addiction in the long term only for online gaming addiction, and the time spent using online games. Both studies with bupropion were managed by psychiatrists, and one[ 25 ] used a multidisciplinary treatment team including a psychiatrist, nurse, psychologist, and social worker.

One study used clonazepam (0.5 mg/d) and sertraline (50 mg/d) combined with CBT to treat Internet addiction[ 139 ]. This study reported the case of a young Brazilian woman with Internet addiction and comorbid psychiatric disorders ( i.e ., panic and OCDs). During the treatment period of ten weeks, both drugs were administered daily whilst CBT was provided once a week, and focused on teaching the patient how to handle anxiety and Internet use through breathing training with diaphragmatic exercises, education about both disorders’ symptoms and about Internet use ( e.g ., time management, triggers of problematic Internet use, changing habits, cognitive restructuring, exposure and response prevention, promotion of social support, alternative activities, and promotion of functional Internet use). This combined treatment was effective for all conditions treated.

Zhu et al[ 207 ] combined a psychological intervention ( i.e ., CBT with sessions every four days for a total treatment period of 40 d) with electroacupuncture in 120 patients presenting with Internet addiction in China. They used three groups: 40 participants in the electroacupuncture group, 36 participants in the psychological intervention group, and 37 individuals participated in the comprehensive therapy group combining both treatment ingredients. Electroacupuncture was applied at acupoints Baihui (GV20), Sishencong (EX-HN1), Hegu (LI4), Neiguan (PC6), Taichong (LR3), and Sanyinjiao (SP6), and retained for 30 min once every other day. Overall, treatment was effective in all groups as Internet addiction symptomatology was successfully decreased, whereas this effect was significantly stronger in the combined therapy group relative to the other groups. The authors furthermore note that the combined treatment improved cognitive function in Internet addiction by means of accelerating stimuli discrimination and information processing on the level of the brain.

Combined therapies have shown effective results for treating Internet addiction, including both post-treatment and follow-up measures. The use of electroacupuncture in combination with a psychological intervention improved treatment success for Internet addiction more than providing cognitive-behavioural treatment only, suggesting the novel therapy electroacupuncture may be beneficial in the treatment of Internet addiction. It is suggested to replicate this study to verify the positive results.

Conversely, given the results found by the included studies, psychopharmacotherapy does not always appear to be as efficacious for psychological problems, such as major depression, as it is for Internet and gaming addiction. This is an interesting finding, because it seems that Internet addiction is usually accompanied by other psychological disorders. Therefore, combining therapies may be a good option for some clients, and should be managed by interdisciplinary teams with structured mid-term interventions.

This systematic literature review has sought to provide an overview of the currently available clinical research on Internet addiction and problematic Internet use using a holistic perspective. Clinical studies concerning Internet addiction, problematic Internet use and excessive online gaming have been included to offer a comprehensive insight into the relevant research to date. A total of 46 empirical clinical studies were identified, which focused on treatment seeker characteristics and different types of therapy provisions. Treatments included psychopharmacotherapy, psychological therapy, and combined treatment. Each of these will be discussed subsequently.

In terms of treatment seeker characteristics, the included studies indicated that the published research ranged from case studies to including patients treated for problematic Internet use in both inpatient and outpatient settings across 13 countries and four continents. It is worth noting that a number of studies indicated that comorbidities appear to be the norm, rather than an exception for individuals who present with the problem of Internet addiction or problematic Internet use. Comorbid mood and anxiety disorders appear to be particularly common. A link between mood disorders and Internet addiction has been suggested in previous research, including both adolescent[ 88 , 210 - 227 ] and adult samples[ 228 - 233 ]. A possible explanation for this strong and frequent link may be the fact that as Internet use increases, online activities take up gradually more time in the lives of Internet users. This reduces the time available to participate in alternative enjoyable pastime activities and to engage with real-life family and friendship circles, which may lead to increased loneliness and stress[ 234 ]. Alternatively, Internet use and gaming may serve as a method to escape real-life problems, effectively resulting in avoidance coping, which may exacerbate stress and negative feelings, and lead to negative consequences, including addiction and depression[ 235 ].

Moreover, a number of earlier studies have shown that anxiety disorders and anxiety-related symptoms, including social phobia, phobic anxiety, and OCD co-occur with Internet addiction in adolescents[ 88 , 236 - 238 ] and adults[ 230 , 238 ]. Previous research including Internet addiction treatment experts from six countries indicated that a large percentage of individuals presenting with Internet addiction at both in-patient and out-patient treatment facilities suffer from comorbid anxiety disorders, most commonly social anxiety and social phobia[ 11 ]. This may be explained through the mechanism of compensation, suggesting individuals who have difficulties engaging and bonding with their peers in real life may instead use the Internet for social interaction, as the online space removes the embodied (and potentially anxiety-provoking) elements from the interaction. These elements include the individual’s outward appearance and the exclusion of (often feared) face-to-face contact in favour of virtual (and often text-based) interaction. This may facilitate social interaction by increased likelihood of self-disclosure[ 239 ], online disinhibition[ 240 ], and hyperpersonal communication, characterised by the increased speed of developing social bonds and intimacy online[ 241 ].

The research presented indicated that comorbidities complicate treatment. This literature review has shown that comorbidities are very common in the context of Internet addiction, emphasising the necessity to investigate the extent to which Internet addiction can be considered a primary or a secondary disorder ( i.e ., secondary to some other psychopathology). Researchers have suggested that given the presence of comorbidity, it is questionable whether Internet addiction deserves an individual diagnosis, as this may lead to other (primary) disorders being underdiagnosed. This may lead to problems regarding efficient treatment choices on behalf of the mental healthcare professionals given that efficacious treatments exist for the more prevalent disorders, such as anxiety and mood disorders[ 242 ], whereas the evidence base for Internet addiction treatment is still rather limited in comparison. However, research has also indicated that some symptoms of Internet addiction appear as stand-alone symptoms and can be differentiated from other psychopathology, providing empirical evidence for the discriminant validity and specificity of the Internet addiction construct[ 243 ]. If comorbidity is present in individuals presenting with Internet addiction or problematic Internet use, clinicians need to target both problems in treatment as research has indicated that individuals with comorbid psychopathology (specifically co-occurring Axis I mental disorders) present with more clinical problems[ 79 ].

In terms of psychopharmacotherapy, the five studies included in this systematic literature review showed that SSRIs ( i.e ., citalopram, clomipramine, fluvoxamine, sertraline, fluoxetine, escitalopram), norepinephrine-dopamine reuptake inhibitors (NDRI; i.e ., buproprion), benzodiazepines ( i.e ., clonazepam), antipsychotic medication ( i.e ., quetiapine), and methylphenidate (i.e ., concerta) were used to treat Internet addiction and Internet-use related problems. Overall, in the included studies, the use of psychopharmacological treatment to alleviate Internet and gaming addiction symptomatology and time spent online appeared successful, suggesting that Internet addiction is an indication for the use of the administered medications[ 20 , 22 , 24 , 28 , 46 ].

The diverse range of administered medication corresponds with the diverse range of presenting problems of the samples included. For instance, concerta is a drug which is efficacious in treating ADHD and therefore commonly used in ADHD treatment[ 244 ] as it has been shown to improve inhibition, motivation and memory by increasing dopamine and norephinephrine concentrations in the brain[ 245 ]. Moreover, given the relatively high prevalence of both mood and anxiety disorders with comorbid Internet addiction as described above, it is not surprising that antidepressant medications and benzodiazepines are frequently used in the pharmacological treatment of Internet addiction. SSRIs are the method of choice for mood and anxiety disorders and related symptoms[ 246 ], and benzodiazepines have anti-anxiety and relaxing properties[ 247 ]. Despite their off-label status in countries including the United Kingdom and Australia, NDRIs are often prescribed for depression-related symptoms and disorders[ 248 ]. In sum, the studied psychopharmacological treatments for Internet addiction proved efficacious in decreasing both Internet addiction symptoms as well as symptoms of other psychopathologies for which the specific medications have been licensed. Even so, clinicians need to assess the costs and benefits of the medication they are prescribing for treating Internet addiction as some side effects may impact treatment acceptability and treatment adherence in patients.

Regarding psychological therapy for Internet addiction and problematic Internet use, ten studies were identified, most of which used a group therapy framework to support clients. Group therapy has a number of advantages over individual therapy. According to the American Psychological Association[ 249 ], the benefits of group therapy include establishing a support network of individuals who experience similar problems and are faced with similar difficulties. Other group members’ stories may put the patients’ own problems into perspective. Moreover, group therapy may create a safe environment in which the sensitive topic of Internet-use related addiction can be discussed openly. Group therapy has the benefit of offering the possibility to learn from others and consequently improve coping skills as individuals differ in their ways they face the world and deal with their lives. These benefits explain why group therapy frameworks are popular psychological therapies for Internet addiction and Internet use-related problems.

The addition of the family network into therapy sessions as evidenced in studies on multimodal school based groups[ 65 ], MFGT[ 119 ], family therapy[ 136 ], and a multi-level intervention model[ 149 ] appears particularly fruitful for young patients, as families are important social groups supporting the young patients’ development. Families teach values, offer emotional attachment, model appropriate behaviours, and discourage high-risk behaviours[ 250 ]. The efficacy of group-based and systemic therapy for adolescents with problems of substance use and addiction has been long established[ 251 ], and suggests that therapeutic frameworks derived from family-based therapies for these disorders may be similarly efficacious in the treatment of Internet addiction and problematic Internet use. The included studies have verified this contention, and therefore clinicians are advised to incorporate families in the psychological treatment of young patients (including adolescents and young adults).

The most commonly applied therapy form was CBT or some variation thereof ( e.g ., CBT-IA)[ 202 ], which has frequently been used in an individual format. The primary goal of CBT is to change maladaptive cognitions and behaviours associated with Internet use, and this therapy form is in line with Davis’[ 252 ] cognitive-behavioural model of pathological Internet use. The model suggests cognitive factors are particularly important in the development and maintenance of Internet addiction. In the included studies, cognitive measures indicated that CBT is efficacious in reducing cognitive impairment associated with Internet addiction[ 86 ]. However, Winkler et al[ 17 ] examined the efficacy of different treatments for Internet addiction in a meta-analysis which included 13 studies, and their results showed that CBT did not perform significantly better than other psychological treatments, although CBT appears to be the most popular approach for treating Internet addiction.

Finally, a number of studies have simultaneously included different forms of therapy, namely psychological treatment supplemented with other types of psychological therapy[ 138 , 180 ], pharmacotherapy[ 21 , 25 , 139 ] or electroacupuncture therapy[ 219 ]. Taken together, all of the combined therapies were efficacious in treating Internet use-related problems, whereas the benefits for comorbid psychopathology ( e.g ., depression) were limited. This suggests that in cases where comorbidity is present and psychopharmacological treatment is administered, the clinician and researcher need to carefully monitor the patient’s progress, adjust the dosage of the medication and/or change the medication administered to achieve the best possible results for the patient. Moreover, as the new treatment modality of electroacupuncture outperformed psychological interventions, it is suggested that researchers replicate these positive results to ensure they hold across other samples.

A number of limitations need to be highlighted in the included studies. Only a few studies ( e.g .,[ 20 , 21 , 23 , 24 , 26 , 27 , 46 , 65 , 78 , 93 , 109 , 119 , 133 , 143 , 188 , 204 ]) included a control group, making it difficult to ascertain whether the positive effects of treatment on Internet addiction symptom and related problem reduction were due to the administered treatment, or to non-specific factors of treatment [ i.e ., the placebo effect (the improvement of symptoms with no treatment)], which can be due to natural history and statistical regression to the mean, among other factors[ 253 ]. Moreover, a lack of intention-to-treat analysis in the reported studies might have caused bias in the results due to treatment non-compliance, changes from the initial treatment protocol, or leaving out data from individuals who dropped out of the study before or during the course of treatment[ 254 ].

For future research, the need to utilise validated and reliable measures of Internet addiction and/or problematic Internet use needs to be stressed. Currently, the diagnostic and research landscape appears particularly broad, and diagnostic criteria used to identify the potential disorder are not globally agreed upon. Researchers are recommended to collaborate to establish a consensus regarding diagnostic criteria and measures in order to improve the reliability across studies and to develop effective and efficient treatment approaches for treatment seekers. This will furthermore contribute to providing an incentive for public policy and healthcare providers to offer funding for those who need professional help. Ultimately, research and clinical initiatives need to focus on providing the best possible care for individuals who experience significant impairment and distress as a consequence of their Internet use.

Over the last 15 years, the number of Internet users has increased by 1000%, and at the same time, research on addictive Internet use has proliferated. Internet addiction has not yet been understood very well, and research on its etiology and natural history is still in its infancy. In 2013, the American Psychiatric Association included Internet Gaming Disorder in the appendix of the updated version of the Diagnostic and Statistical Manual for Mental Disorders as condition that requires further research prior to official inclusion in the main manual, with important repercussions for research and treatment.

Research frontiers

To date, reviews have focused on clinical and treatment studies of Internet addiction and Internet Gaming Disorder. This arguably limits the analysis to a specific diagnosis of a potential disorder that has not yet been officially recognised in the Western world, rather than a comprehensive and inclusive investigation of Internet-use related addictions (including problematic Internet use) more generally.

Innovations and breakthroughs

The aim of this literature review is to provide a comprehensive overview of clinical studies on the clinical picture of Internet-use related addictions from a holistic perspective.

Applications

Researchers are recommended to collaborate to establish a consensus regarding diagnostic criteria and measures in order to improve the reliability across studies and to develop effective and efficient treatment approaches for treatment seekers. This will furthermore contribute to providing an incentive for public policy and healthcare providers to offer funding for those who need professional help. Ultimately, research and clinical initiatives need to focus on providing the best possible care for individuals who experience significant impairment and distress as a consequence of their Internet use.

Terminology

Internet addiction is a condition that requires further research prior to official inclusion in the diagnostic manuals, with important repercussions for research and treatment. To date, reviews have focused on clinical and treatment studies of Internet addiction and Internet Gaming Disorder. This arguably limits the analysis to a specific diagnosis of a potential disorder that has not yet been officially recognised in the Western world, rather than a comprehensive and inclusive investigation of Internet-use related addictions (including problematic Internet use) more generally.

Peer-review

In this systematic review, the authors have presented a thorough and critical analysis of clinical research on Internet addiction related studies.

Supported by A grant from the European Commission (“Tech Use Disorders”; Grant ID: FP7-PEOPLE-2013-IEF-627999) awarded to Olatz Lopez-Fernandez.

Conflict-of-interest statement: No potential conflicts of interest relevant to this article were reported.

Data sharing statement: No additional data are available.

Open-Access: This article is an open-access article which was selected by an in-house editor and fully peer-reviewed by external reviewers. It is distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

Peer-review started: September 6, 2015

First decision: October 27, 2015

Article in press: January 7, 2016

P- Reviewer: Lai C S- Editor: Qi Y L- Editor: A E- Editor: Jiao XK

This paper is in the following e-collection/theme issue:

Published on 16.5.2024 in Vol 26 (2024)

Person-Generated Health Data in Women’s Health: Scoping Review

Authors of this article:

• Jalisa Lynn Karim 1 , BA, BMath   ; 
• Rachel Wan 1 , BSc, BSN, RN   ; 
• Rhea S Tabet 2 , BSc   ; 
• Derek S Chiu 3 , BSc, MSc   ; 
• Aline Talhouk 1 , BA, MSc, PhD  

1 Department of Obstetrics and Gynaecology, University of British Columbia, Vancouver, BC, Canada

2 Department of Pharmacology and Therapeutics, McGill University, Montréal, QC, Canada

3 Department of Molecular Oncology, University of British Columbia, Vancouver, BC, Canada

Corresponding Author:

Aline Talhouk, BA, MSc, PhD

Department of Obstetrics and Gynaecology

University of British Columbia

593 - 828 West 10th Ave

Vancouver, BC, V5Z 1M9

Phone: 1 604 875 3111

Email: [email protected]

Background: The increased pervasiveness of digital health technology is producing large amounts of person-generated health data (PGHD). These data can empower people to monitor their health to promote prevention and management of disease. Women make up one of the largest groups of consumers of digital self-tracking technology.

Objective: In this scoping review, we aimed to (1) identify the different areas of women’s health monitored using PGHD from connected health devices, (2) explore personal metrics collected through these technologies, and (3) synthesize facilitators of and barriers to women’s adoption and use of connected health devices.

Methods: Following the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines for scoping reviews, we searched 5 databases for articles published between January 1, 2015, and February 29, 2020. Papers were included if they targeted women or female individuals and incorporated digital health tools that collected PGHD outside a clinical setting.

Results: We included a total of 406 papers in this review. Articles on the use of PGHD for women steadily increased from 2015 to 2020. The health areas that the articles focused on spanned several topics, with pregnancy and the postpartum period being the most prevalent followed by cancer. Types of digital health used to collect PGHD included mobile apps, wearables, websites, the Internet of Things or smart devices, 2-way messaging, interactive voice response, and implantable devices. A thematic analysis of 41.4% (168/406) of the papers revealed 6 themes regarding facilitators of and barriers to women’s use of digital health technology for collecting PGHD: (1) accessibility and connectivity, (2) design and functionality, (3) accuracy and credibility, (4) audience and adoption, (5) impact on community and health service, and (6) impact on health and behavior.

Conclusions: Leading up to the COVID-19 pandemic, the adoption of digital health tools to address women’s health concerns was on a steady rise. The prominence of tools related to pregnancy and the postpartum period reflects the strong focus on reproductive health in women’s health research and highlights opportunities for digital technology development in other women’s health topics. Digital health technology was most acceptable when it was relevant to the target audience, was seen as user-friendly, and considered women’s personalization preferences while also ensuring accuracy of measurements and credibility of information. The integration of digital technologies into clinical care will continue to evolve, and factors such as liability and health care provider workload need to be considered. While acknowledging the diversity of individual needs, the use of PGHD can positively impact the self-care management of numerous women’s health journeys. The COVID-19 pandemic has ushered in increased adoption and acceptance of digital health technology. This study could serve as a baseline comparison for how this field has evolved as a result.

International Registered Report Identifier (IRRID): RR2-10.2196/26110

Introduction

The practice of keeping notes to monitor one’s health is not a recent phenomenon. Individuals have long recognized the benefits of tracking various health aspects, including the ability to be more active participants in managing their health, gaining a more complete picture of their health, and reducing the frequency of in-person appointments; however, this tracking was previously done through paper logs [ 1 ]. Today, with the proliferation of digital tools, self-tracking has significantly evolved and become more prevalent. The increasing pervasiveness of technology, particularly mobile phones, has seamlessly integrated it into our daily lives, making self-tracking more accessible and convenient than ever before [ 2 ]. Connected digital health technologies such as smartphones, wearables (eg, smartwatches), sensors, the Internet of Things (eg, internet-enabled weight scales), and web-based applications have permeated society and are increasingly adopted to collect and track health data. In 2021, a total of 87% of Canadians owned a smartphone, up by 73% from 2009 [ 3 ]. With >350,000 digital health apps accessible via these smartphones [ 4 ], approximately two-thirds of Canadians digitally track at least one aspect of their health [ 5 ]; similar statistics have been reported in the United States [ 6 ]. Moreover, since the introduction and popularization of fitness trackers in 2010, sensors and wearable devices have increasingly become part of daily life [ 2 ]. During the global COVID-19 pandemic, self-tracking took on even greater significance [ 7 , 8 ]. With the heightened awareness of health and the need for proactive measures, individuals have turned to self-tracking to monitor their well-being and make informed decisions. With this transformation, self-tracking has transcended its previous boundaries, offering individuals new opportunities to optimize their well-being and ushering in a new era of personalized health care [ 9 - 11 ].

Digital health tools have revolutionized the active and passive collection of health data through various applications and wearable devices. These various digital health tools collect and generate an unprecedented amount of data that can be used to glean insights into one’s health. Person-generated health data (PGHD), which are clinically relevant data captured outside traditional care settings [ 12 ], provide valuable insights that empower users to self-monitor and reflect on their health. PGHD can refer to any data collected from wearable and smart devices as well as self-input information into platforms such as mobile apps and websites. By leveraging digital technologies, individuals can collect and store their health data, enabling them to actively manage their own health and monitor chronic conditions. Furthermore, the integration of these data with research presents an opportunity to improve the patients’ experience and enhance personalized medicine. The recognition of this opportunity has started to take shape with patient-reported outcome measures and patient-reported experience measures being increasingly recognized as essential information to assess quality of care and prioritize patient-centered approaches and with mandatory assessment as part of clinical trials [ 13 ]. Seamlessly linking PGHD that are captured outside traditional care settings with clinical data and disease models can unlock new possibilities for tailored treatments and predictive informatics. The integration of digital health tools not only facilitates patient-provider communication but also offers opportunities for education, increased awareness, self-tracking, and self-monitoring without burdening health care resources. By focusing on the individual’s experience, personalization, and prevention, digital health tools contribute to a patient-centered care paradigm that aims to optimize health care outcomes and improve overall well-being while empowering patients to take charge of their health.

In recent years, the emergence of femtech, defined as technology-driven solutions specifically designed to address women’s health needs and concerns, has revolutionized the landscape of self-tracking and health care for women [ 14 ]. Femtech encompasses a wide range of digital tools, such as period-tracking apps, fertility monitors, pregnancy trackers, and menopause management platforms. These innovative solutions empower women to track and manage their reproductive health, menstrual cycles, and overall well-being with greater accuracy and ease. Femtech has not only provided women with personalized insights into their bodies but has also helped break taboos and encouraged open conversations about topics that were once stigmatized or ignored. The rapid growth of femtech has promoted access to women’s health information, greater autonomy in decision-making, and enhanced overall health care experiences for women worldwide. It has become an integral part of the self-tracking movement, demonstrating the transformative power of technology in promoting women’s health and well-being.

In this study, we reviewed the use of digital tools and PGHD in women’s health research, focusing on articles published between January 1, 2015, and February 29, 2020, before the COVID-19 pandemic. Our review encompassed various connected health devices, which included both passive data collection devices such as wearable sensors and active input devices such as smartphone apps and websites. This review sought to accomplish the following:

• Identify the different areas of women’s health and health-related behaviors monitored using PGHD from connected health devices.
• Explore personal metrics collected through these technologies.
• Synthesize facilitators and barriers that impact women’s adoption and use of connected health devices in managing their health.

This scoping review was conducted based on our previously published protocol [ 15 ]. We adopted the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) guidelines [ 16 ]. The completed checklist is provided in Multimedia Appendix 1 [ 16 ].

Search Strategy

The search strategy was designed in close collaboration with a reference librarian with input from the authors (JLK and AT). We searched a total of 5 databases: MEDLINE, Embase, APA PsycINFO, CINAHL Complete, and Web of Science Core Collection. Initial searches were completed in early March 2020. Searches were limited to articles published in 2015 or later because publications with the keyword “digital health” started to emerge in the literature around that time [ 17 ], and with the fast evolution of the field, previous articles may not be relevant to the current landscape. Keywords and subject headings were designed to search the literature for the intersection of the following 4 topics: women, health, digital devices, and tracking. The full search strategy, including a full list of search terms, was published with the protocol [ 15 ] and is available in Multimedia Appendix 2 .

Eligibility Criteria

We were interested in digital technologies and interventions targeting women and people assigned female at birth. To be included in the review, studies needed to specifically target women, focus on female-only health topics (eg, menstruation), or only include female participants. We included a variety of publication types but excluded conference abstracts and conference reviews, editorials, letters, and comments due to the limited details in such literature.

We excluded articles that presented digital health tools designed for health care providers as we were primarily interested in devices and apps that women can engage with outside a clinical setting. Articles only discussing the use of real-time consultations, whether through video, phone, or web-based chat, were excluded. We excluded articles that described digital health tools used solely for educational purposes; to maintain the focus of the review on tracking or monitoring one’s data for health, devices must have allowed users to input personal health data.

The complete inclusion and exclusion criteria are presented in Textbox 1 . We decided to retain the original inclusion end date of February 29, 2020, to maintain a focus on the literature before the COVID-19 pandemic and avoid potential complexities caused by pandemic-related disruptions in research and health care practices. Concentrating on prepandemic literature also established a clear baseline for future comparisons and allowed us to maintain feasibility of completion without compromising quality given the broad scope of the review.

Inclusion criteria

• Published between January 1, 2015, and February 29, 2020
• Refers to a health issue that pertains only to women or comprises only female participants of any age
• Includes the use of connected health tools for tracking or monitoring some aspect of health, which could include smartphone apps, wearable devices, the Internet of Things (eg, Bluetooth- or internet-enabled glucometers, blood pressure cuffs, and weight scales), and implantable devices
• Involves data collection from the user of the connected health tool (ie, the user either manually inputs data into the device or they are automatically uploaded)
• The user must be able to interact with the app or device on her own at home (outside a clinical setting)
• Available in English

Exclusion criteria

• Not available in English
• Conference abstracts, conference reviews, editorials, letters, or comments
• Study media releases and user reviews of specific applications
• Research conducted on animals
• Research involving male participants
• Tracking of infants and children unless tracking breastfeeding (because breastfeeding is directly related to the mother’s health and body)
• Devices or apps that are meant for health care provider use or use in a clinical setting only or cannot be used independently without a health care provider present
• Digital health tools that are only for educational or informational purposes and do not allow the user to enter or track her own data (ie, no information exchange)
• Telemedicine services (eg, live video consultations with health care providers)

Study Selection

We imported the results from the database searches to the Covidence systematic review software (Veritas Health Innovation). Covidence detected records believed to be duplicates, and these were manually checked before removing them. In addition, some articles were manually recognized as duplicates during the screening process and were subsequently tagged as duplicates and removed. Screening was conducted independently by at least 2 reviewers (JLK, RST, and AT) at both the abstract screening stage and the full-text screening stage. We attempted to contact the corresponding authors of articles that passed abstract screening when we were unable to locate the full text. Conflicts at either stage were discussed and agreed upon among the 3 authors involved in the screening process.

Data Charting and Deviations From the Protocol

The final list of data charting elements is provided in Textbox 2 . Data charting for all elements except for usability and acceptability was conducted using Google Sheets created by the study team. The categories for different data charting options were initially created based on a small subset of articles and were discussed among the authors involved in the charting process. The team met regularly throughout the data charting process to discuss and refine coding categories that best summarized the data. Starting with more granular categories and later combining them into broader concepts was necessary to summarize the number of articles included in this review. For each article included, data were charted by one reviewer (RW or RST) and verified for accuracy by a second reviewer (JLK). Data were summarized in bar graphs, maps, and tables (JLK, RST, and DSC), as presented in the following sections. For the locations, we recorded the countries from which the participants were recruited (if applicable). If an article did not describe recruiting participants, then the countries of the authors were recorded based on the authors’ affiliations.

Article information

• Year of first publication

Study characteristics

• Country or countries in which the research was conducted
• Research study type

Contexts for women’s connected health

• Health areas of focus

Digital device details

• Types of digital health
• Metrics collected by the devices

Usability and acceptability

• Facilitators of and barriers to the use of the technologies (coded into themes)

For the thematic analysis, articles that mentioned any aspect of usability, acceptability, facilitators, or barriers to the use of digital health tools were imported into NVivo (R1 2020; QSR International). Coding was done independently by 2 reviewers (JLK and RW) and then combined through discussions. As with the data charting process, we initially coded more granularly and then grouped the detailed codes together later in the analytic process. Decisions on how to group the codes into themes and subthemes were made through group consensus (JLK, RW, and AT).

In our protocol, we indicated that we would extract the name of the device or app used in each study. While we did complete this step in our data charting, we have not presented the results in this paper. Several articles either did not specify the brand name (eg, only specified that it was a mobile app) or had digital health tools named after the study, so we did not find this information useful to showcase in our results. There were no other deviations from the published protocol.

The searches identified 14,629 records that were imported into the Covidence software for deduplication and screening. After deduplication, a total of 9102 articles were screened for relevance, and 8545 (93.88%) were excluded based on title and abstract. From reading the full texts of the remaining 557 records, an additional 151 (27.1%) were excluded. The most common reasons for exclusion were the inability of study participants to enter or track their own data (58/151, 38.4%) or because the digital health technology was designed to be used by or with a health care provider (48/151, 31.8%). The remaining 406 publications were included in the scoping review. Some of the included publications reported on the same research project; in those cases, all of them were included. Our search did not encounter any articles that directly addressed or mentioned the inclusion of intersex, transgender, or nonbinary participants. The PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) flow diagram detailing the full study selection process is shown in Figure 1 . The list of included articles sorted by health areas of focus can be found in Multimedia Appendix 3 [ 18 - 58 ].

Year and Country

There was an increasing trend in number of publications per year, with 10.1% (41/406) of the articles published in 2015, a total of 13.3% (54/406) of the articles published in 2016, a total of 18% (73/406) of the articles published in 2017, a total of 26.4% (107/406) of the articles published in 2018, and 29.6% (120/406) of the articles published in 2019. Only 2.7% (11/406) of the publications were from 2020 because our cutoff date for inclusion was February 29, 2020.

Articles included in the review covered worldwide research, including every continent except Antarctica ( Figure 2 ). As we only considered articles written in English, most of the articles were published in Western, English-speaking countries, primarily the United States (169/406, 41.6% of the articles), the United Kingdom (34/406, 8.4% of the articles), Australia (33/406, 8.1% of the articles), and Canada (19/406, 4.7% of the articles). Other countries where several included articles were published were China (13/406, 3.2% of the articles), the Netherlands (13/406, 3.2% of the articles), Spain (13/406, 3.2% of the articles), and Sweden (10/406, 2.5% of the articles).

Interestingly, of the 169 articles from the United States, 26 (15.4%) specifically focused on African American or Black, ethnic minority, or low-income women. One study from Singapore specifically included multiethnic women [ 18 ], and a study from Australia included Indigenous Australian women as their participants [ 19 ]. In addition, one review conducted by researchers in Australia looked specifically at studies with women from culturally and linguistically diverse backgrounds [ 20 ].

Study Types

The types of studies that used digital health tools in women’s health research are reported in Figure 3 by year of publication (note that the articles could fall into more than one study category). The most common study type encountered was feasibility or acceptability studies (197/406, 48.5% of the articles, including 9/197, 4.6% protocols), followed by effectiveness studies (146/406, 36% of the articles, including 36/146, 24.7% protocols) and publications reporting on digital tool prototypes (73/406, 18% of the articles). Effectiveness studies reported on outcome measures of an intervention, including randomized and nonrandomized trials with one or more study arms. Reviews (of published literature, apps, or wearables), viewpoints, manuals, case studies, or analytical methods (56/406, 13.8% of the articles combined) were also encountered. Observational or correlative studies (44/406, 10.8% of the articles, including 3/44, 7% protocols) were studies that observed the health behaviors of individuals through digital health technologies without assessing the effectiveness of an intervention or analyzed associations between variables (eg, associations between heart rate and loss-of-control eating) [ 21 ]. Finally, measurement studies (23/406, 5.7% of the articles) reported on the validity, reliability, or accuracy of a digital health tool.

Health Areas of Focus

The analysis of the reviewed articles highlighted research in several recurring women’s health areas of focus. A full breakdown of the health areas is reported in Table 1 (articles could fall into more than one health area). Pregnancy and the postpartum period emerged as the most prominent health area with 42.6% (173/406) of the articles. Within this category, there was a specific emphasis on general care and monitoring (45/173, 26% of the articles), physical activity and diet (34/173, 19.7% of the articles), and glucose monitoring (31/173, 17.9% of the articles). Cancer was identified as the second most common health area, with 19.5% (79/406) of the articles dedicated to its exploration. Specifically, a significant focus was observed on the relationship between cancer and cardiovascular health, with 47% (37/79) of the articles addressing this aspect. The impact of lifestyle on overall health and well-being was also addressed, with 14.3% (58/406) of the articles delving into physical activity, sedentary behavior, diet, weight, and obesity. Menstrual, sexual, and reproductive health were explored in 12.1% (49/406) of the articles to shed light on various aspects of women’s reproductive health and associated concerns, with 76% (37/49) focusing on menstrual cycle tracking or fertility monitoring. Furthermore, 9.9% (40/406) of the articles were dedicated to chronic conditions (such as urinary incontinence, osteoporosis, and diabetes) with the aim of enhancing understanding and developing interventions for individuals living with chronic health conditions. To accommodate articles that did not fit within the primary health areas, an Other category comprising 6.4% (26/406) of the articles was established. This category included articles on athlete monitoring (10/26, 38% of the articles), such as heart rate monitoring during sports tournaments; mental health and quality of life (9/26, 35% of the articles); gender-based violence (3/26, 12% of the articles); and more. Finally, a small subset of 0.5% (2/406) of the articles did not align with any specific health area; these included a publication reporting results from a survey on African American women’s willingness to participate in eHealth research [ 22 ] and a publication analyzing women’s interactions with digital health technologies [ 23 ]. These articles were included because, although they did not discuss a specific health area, they still focused on women’s use of digital health tools in general.

a PCOS: polycystic ovary syndrome.

b CVD: cardiovascular disease.

c COPD: chronic obstructive pulmonary disease.

d SLE: systemic lupus erythematosus.

e IC: interstitial cystitis.

f BPS: bladder pain syndrome.

g ABL: accidental bowel leakage.

Figure 4 shows how the health areas of focus for women’s use of digital health changed over the years that were included in the review (2015-2019 plus January 2020-February 2020). There was an increasing trend from 2015 to 2020 in the number of publications focusing on pregnancy and the postpartum period, as well as cancer and menstrual, sexual, and reproductive health. However, articles focused on women’s use of digital health for lifestyle-related topics and chronic conditions did not see a notable increase over those years.

Type of Digital Health and Metrics Collected

Within the articles reviewed, smartphone, mobile, or tablet apps emerged as the most prevalent type of digital health (295/406, 72.7% of the articles), followed by wearable devices (165/406, 40.6% of the articles) and websites or patient portals (93/406, 22.9% of the articles). Other types of technology were not investigated as much. For example, 13.5% (55/406) of the articles addressed smart devices or the Internet of Things (referring to objects with sensors that connect to a network, such as Bluetooth-enabled glucometers and blood pressure machines). Finally, 7.4% (30/406) of the articles reported on 2-way messaging, 1% (4/406) of the articles reported on interactive voice response telephone calls, and only 0.5% (2/406) of the articles reported on implantable devices. With respect to the metrics collected, we found >250 metrics, such as heart rate, number of steps, mood, ovulation test results, and days of menstruation. A full list of the metrics is reported in Multimedia Appendix 4 .

Thematic Analysis

Of the 406 articles included in this scoping review, 168 (41.4%) mentioned usability, acceptability, facilitators, or barriers to the use of digital health tools at least once. Our thematic analysis identified 6 themes: (1) accessibility and connectivity, (2) design and functionality, (3) accuracy and credibility, (4) audience and adoption, (5) impact on community and health service, and (6) impact on health and behavior. The themes are described in further detail in the following sections.

The thematic analysis detailed in the following sections is primarily based on the views of the participants in the studies we reviewed to provide a user perspective; however, one subsection in theme 5 focuses on the health care provider perspective.

Theme 1: Accessibility and Connectivity

The accessibility and connectivity of digital technologies emerged as an important theme with two subthemes: (1) cost and convenience and (2) connectivity, compatibility, and software issues.

Cost and Convenience

Our analysis revealed that the cost and convenience of digital tools collecting PGHD are important factors that can impact their adoption and use. On the one hand, digital health technologies can be seen as more affordable compared to traditional health care visits and more accessible to a wider range of people, including those of a lower socioeconomic status. On the other hand, they can also be perceived as too expensive and novelty items, and associated extra costs such as data plans can also be a barrier for some people. Because PGHD can be collected and entered throughout the day in real time, and because most people carry a phone around with them every day, these technologies offer greater convenience than traditional in-person health care encounters by providing anytime, anywhere virtual access and putting information at people’s fingertips through smartphones and web platforms. One user spoke about an in-app treatment program:

That was what was so good about this, I can do this at home myself, no need to book an appointment, find the time and suit others, and you know, that process of booking a time. [ 24 ]

Some inconvenient aspects of digital health technologies include uncomfortable wearables that are too bulky, difficulty of use, or not fitting into the users’ lifestyles, as noted in one article:

Women also mentioned that the comfort of the wearable sensors was a barrier. Comfort became a barrier for some women during exercise and hot weather. [ 25 ]

Devices with a short battery life and wearables that are not water resistant are also considered inconvenient as they require the user to frequently remember to charge the device or put the wearable back on after water-based activities. Certain restrictions, such as not being able to wear a device in a workplace, can also create inconvenient barriers for some users.

Connectivity, Compatibility, and Software Issues

Factors related to connectivity and other issues such as device synchronization, freezing, or disconnection can significantly impact the user experience and engagement with digital health tools. For example, the dependence on mobile and internet access can be a disadvantage. Cellphone and network coverage limitations can pose an important barrier in rural areas or during travel. Where mobile data or Wi-Fi connection are limited, people may struggle to use digital health tools that require internet connection; this can create disparities in access to health care resources, particularly for those of a lower socioeconomic status or living in remote communities with limited infrastructure. Incompatibility between operating systems such as Android and iOS, iPhone and iPad, or various browsers can also be an important barrier to accessing digital health technology.

Software issues can significantly impact the user experience of digital health technologies. Broken links can prevent users from accessing valuable information or features within apps or websites. App crashes can discourage users from engaging with the digital health tool altogether. In addition, slow loading times can negatively impact the user experience, making it challenging for users to access information or features quickly and efficiently.

Theme 2: Design and Functionality

The second theme centered on design and functionality and included four subthemes: (1) appearance and design; (2) functionality and features; (3) personalization; and (4) safety, privacy, and security.

Appearance and Design

Appearance and design play important roles in the success of connected health devices. In terms of app design, the color scheme and layout facilitate user-friendliness. Bad formatting can make it difficult for users to read or understand the content of an app or website. Font size that is too small can be challenging for those with visual impairments, and some color combinations can be difficult to read. The quality of the images used in digital health interventions can also impact user experience, with low-quality images potentially making it difficult for users to interpret the information being presented.

Apps that are visually appealing and easy to use are more likely to be successful. When it comes to wearables, women tend to prefer sleek, understated designs that are esthetically pleasing without being bulky. A sleek design can encourage use of the wearable. For example, some women consider their wearable to be a fashion item that sparks conversation, which encourages their continued use of the device, as illustrated in a participant quote:

Um, that it’s, like, kind of stylish, like, I feel, like, cool that I wear one. A lot of people ask me, they’re like, oh, which one is that, like, is that a Fitbit, is that an Apple watch? It has the interchangeable bands and stuff like that, so, you can, like, change the color of it and everything. It’s like a conversation piece. [ 26 ]

Other women prefer more discretion in the design of wearables and their size or in the app icon on their mobile device because they do not want to reveal the purpose of the device to others. People may feel self-conscious when wearing the device or using the app, especially if it reveals their medical condition. For example, the following quote is from a study that incorporated a sensor band worn on the wrist to help female undergraduate students with problematic drinking:

P310 noted that while in class, “my professor commented on it which made me feel awkward.” [ 27 ]

Functionality and Features

In terms of functionality, the availability of clinical interpretation of user data is deemed essential, and health warnings based on recorded PGHD are noted to be helpful. Moreover, notifications and reminders are also useful for improving adherence to self-tracking and maintaining goals, and users appreciate receiving automated SMS text messages and feedback on progress. Actionable advice is seen as very important, and women expressed a desire for more interaction and the ability to integrate with other apps. For example, users want the ability to access information from their health record and to be able to see graphical summaries of their data over time. Regarding the presentation of information, users appreciate concise information written in simple language. Choice of words is also perceived as especially important to ensure that the information is easy to understand. People enjoy the gamification of content, and the graphical presentation of results is found to be informative.

The ability to upload multimedia and the ability to customize the application’s displays and notifications are noted as features that improve user engagement and satisfaction. The ability to record voice notes and consultations within apps is noted as a desirable feature, as well as having the option to book appointments directly through apps. Women also want the option to sync their desktop or phone calendar with apps to remind them of medical appointments and prescription requests, as some researchers noted:

Women could see the potential usefulness of being reminded to order their next prescription through the electronic alerts system. They found managing the monthly prescription requests challenging long-term and found setting up the reminder easy with the alert popping up on their phone or tablet. [ 28 ]

The application also allows women to set appointment reminders to ensure she is not missing her appointments and developing gaps in her care [...] “It allows me to remain organized for my visits to my OB with concerns, questions, symptoms I have experienced since my last visit.” [ 29 ]

Issues that negatively impact user engagement and outcomes are the inability to edit information or unsubscribe from notifications, which are sometimes thought to be either inconvenient or intrusive, as well as the presence of advertisements within the app. Ease of use is essential as apps or websites that are difficult to navigate can discourage users from engaging with them. For example, a study including the use of a mobile phone app reported the following:

A hindrance and disliked aspect was the difficulty in navigating through the app (eg, no back button, clunkiness, and the inability of participants to edit their inputted daily goals) as well as a lack of color and visuals within the app, giving it a clinical appearance. [ 30 ]

Some women are not comfortable answering questions that they consider intrusive, such as those related to sexual health. They rely on applications to provide trusted information about their condition and want suggestions for additional resources such as website links and local information.

Personalization

Women generally expressed a desire for greater personalization across several features within digital health tools. Messages and notifications that are personalized to the user’s health and self-tracking history and goals are more motivational and less likely to be ignored or perceived as irritating. Even factors such as using a first name in messages from the app make women feel like the messages are more personal and supportive.

Users have individual preferences when it comes to the frequency and timing of notifications, and it is important for digital health apps to allow for the customization of these settings as they can greatly impact user engagement and adherence. Moreover, users expressed a desire for the ability to customize their goals and the metrics they tracked. For example, they may want to change their goals in an app when their life circumstances change (eg, moving, starting a new job, becoming pregnant, or sustaining an injury). The ability to customize the dashboard of an app or website according to the user’s goals was also expressed as a desired feature. The ability to make these customizations will improve their adherence in the long run as their goals evolve.

When it comes to wearables, their placement on the body influences users’ preference and adherence to their use. For example, some women may prefer a wrist-worn device, whereas others may prefer a chest strap, a ring, or a device worn on the waist or ankle. The type of activity being monitored may also influence placement preference. A wrist-worn device may be more appropriate for monitoring steps, whereas a chest strap may be better suited for monitoring heart rate during exercise. Furthermore, placement preference may also be influenced by factors such as comfort, convenience, and visibility. A user may prefer a wrist-worn device because it is more visible and easier to access, whereas another user may prefer a device worn on the waist because it is less obtrusive and more comfortable during exercise or sleep. For instance, one study found the following:

Eight of the participants (40%) reported at some point of the long study period that the smart wristbands were uncomfortable to wear, especially at night. The wristbands irritated the skin, possibly due to pregnancy-related swelling. [ 31 ]

Finally, users have different preferences for how they want information to be presented in an app or website. Some people prefer to read content that is written out with citations and links to external websites. Others enjoy learning content from videos or audio recordings. When looking at their trends and progress, some users like to look at detailed graphs showing their daily progress, whereas others prefer to look at the data occasionally and only receive high-level information. The challenges concerning personalization were articulated by several authors:

It’s a difficult one. Some women want the full picture to fully understand what they are taking. Others want a black and white sketch, but not the details. They just want to know enough. Others do not want to see the picture, they just want to get on with it without knowing too much. Catering for all is a challenge. [ 28 ]

Safety, Privacy, and Security

Women are sometimes concerned about the physical safety of certain devices. For example, some mothers worried about their wearable wristbands scratching their babies [ 31 ]. Others worried about the effects of wearable devices on their skin, as expressed by a participant:

It’s weird because it does have a little laser thing on it, and I wonder if that’s, like, harming my skin (laughing). Like, I’ll sleep in it, and when I wake up I’ll have a red spot on my arm, it’s itchy sometime or sensitive, and I think it’s because of the laser thing, but I don’t really know. [ 26 ]

Some women are concerned about the privacy and security of digital health technologies and expect appropriate safeguards to be implemented in the tools they use. However, privacy and data security are not a concern for all women:

As I said, I’m very critical about patient data in general, especially in terms of data security...If you have a free app, it really depends on what happens to the private data. As a matter of fact, usually the information is stored on the app itself, and so other apps might gain access to the data easily. [ 32 ]

The survey revealed a low level of concern about issues relating to privacy or security of personal data. This suggests that privacy concerns were secondary to the benefits offered by uploading personal details into apps to provide the type of customisation they seek. [ 33 ]

Researchers also shared that some users perceived there to be more privacy when using an app as compared to traditional ways of communicating:

Some participants perceived the storage of their glucose levels on the smartphone as more secure than their current registration in a booklet. [ 34 ]

Women, particularly those who worked outside of the home, also commented that they appreciated the added convenience and privacy of this [text-based] communication method over phone-based communication. [ 34 ]

Theme 3: Accuracy and Credibility

In theme 3, we identified accuracy and credibility as important factors for acceptability considerations in digital health technologies.

The accuracy of digital health can impact user trust and adoption. Digital health tools enable users to keep track of their health, symptoms, and behaviors over time without relying on memory recall, which can be inaccurate or incomplete. Many studies reported that digital tracking can lead to more accurate data collection compared to paper-based methods. For example, at-home measurements of blood pressure and other vital signs have been found to be more accurate than those taken in a hospital or clinic setting. In some cases, apps are even able to accurately predict users’ menstrual cycles and mood changes. In addition, food diaries and activity trackers are often found to be more accurate when tracked within the app compared to using traditional paper-based methods. As the following participant conveyed, digital health may also make it easier for patients to tell the truth about their habits or health concerns:

I like this principle because...I know exactly, that via tablet one would admit things you wouldn’t necessarily tell the doctor or nurse. So, for starters, you can state it in the application. Of course, a conversation shouldn’t be missed afterwards, but this might make it easier for you to overcome yourself. [ 32 ]

However, accuracy can still be an issue in digital health. Different devices can produce different measurements, and some devices may miscount steps, the intensity of workouts, or the quantity and quality of sleep. For example, some women reported devices not tracking their steps while pushing a grocery cart or stroller, whereas others found that their steps were overcounted due to arm movements while they were seated. In addition, some users reported that food tracking options in apps were limited and did not include foods from their culture. Therefore, users may perceive digital health tools as not being representative of their true activity, which may lead them to discontinue the use of the devices. The following participant quote refers to a wrist-worn activity tracker:

Out paddling and we’re huffing and puffing and barely breathing and this isn’t even triggering anything. So it shows [...] that our 150 minute goal is like 60 or half of that. But we’ve actually put in the effort and then you just give up after a while. Like there’s no way I can make this. [ 35 ]

Women often prefer evidence-based health information (eg, explanations of conditions and symptoms and health advice) from a trustworthy source, such as an app curated from up-to-date and evidence-based research, over general internet searches. Users reported that the information provided in some apps was incomplete or inaccurate, with gaps in content or contradictory information that diminished their trustworthiness. In such cases, users may still prefer to talk to a health professional for more trustworthy information. Some women may also find it challenging to trust information that does not disclose sources as they are unsure of its reliability. Devices that are endorsed by, cite, and link to trustworthy health sources are more appealing to users. When sharing results from a web-based survey, the authors of one study reported the following:

Some respondents were specific about from where such advice should come, stating that they wanted expert, credible and up-to-date advice while others noted that they would like to see more Australian-specific or locally-based information in apps or apps that were not linked to the manufacturers of pregnancy or baby products. [ 33 ]

Theme 4: Audience and Adoption

Our fourth theme concerns audience and adoption, which includes two subthemes: (1) demographics and inclusivity and (2) timing and circumstances.

Demographics and Inclusivity

One of the challenges with digital health is to avoid one-size-fits-all interventions and to strive to tailor interventions to address the specific needs of different populations. Digital health that targets specific demographic groups or specific health conditions may increase the adoption of digital tools in those populations. That said, even when targeting people with specific health conditions as the audience, attention must be paid to the language and content in apps and websites. Some researchers noted that women did not want to participate or continue in their study because they did not want to constantly be confronted with their disease. Too much of a focus on disease and ill health can deter women from engaging with the tools, as commented on by some authors:

All but one participant preferred text content that focused on health and physical activity rather than content explicit to cancer. [ 36 ]

The women emphasized that less attention should be paid to chronic disease management and medication as the only treatment option. [...] it was important to explain the implications of the result of the scan and the risk of fractures in a way that will not place the women in a sickness role unnecessarily. [...] The knowledge base of osteoporosis should focus on osteoporosis as a common condition instead of a chronic bone disease. [ 37 ]

Younger women are often more familiar with and more comfortable using digital technology and, therefore, are more likely to use and adhere to a digital health protocol. Users with low technology skills want more training on how to use the digital health tools properly. Little provision is made for those for whom English is not their primary language, which can limit the accessibility and usefulness of digital health interventions. Factors such as language barriers, cultural beliefs, or lack of access to technology may lead to less adoption by some people belonging to ethnic minority groups. The relevance and usefulness of digital health may also vary based on geographic location.

Digital health tools are negatively perceived by some users if not designed to be inclusive of attributes such as body type or gender. For example, users prefer applications that use pictures or models that represent a diverse range of body sizes. Digital health technologies may not be gender inclusive and can conflate sex and gender. It is important to consider the unique health needs and experiences of individuals across the gender spectrum, as several researchers reported:

Participants commented on an exercise demonstration video and recommended that the model should have an “everyday-look” (e.g. plain clothes, jewellery). Also a choice of models of different ages to engage a wider range of patients and help them to relate or identify with the model was proposed. [ 38 ]

[Participant quote]: Maybe the body image it presents...like on a lot of apps, the people doing it looked like they were athletes already. And maybe they should have more people that look normal. [ 39 ]

Two women commented on the gendered design of most FTAs. FTA092 commented that “I chose Clue because it’s the only app that wasn’t pink.” FTA051 also found the gendered design of her previous app insulting; “my last app had a pink flower and was called MyDays or something ...I felt like they were trying to lure me in with this kind of ‘women’s’ approach” (FTA051). She subsequently stopped using that app and downloaded Clue. [ 40 ]

Timing and Circumstances

Individuals are more motivated to use digital health tools during times of illness or when they have a specific health goal in mind. The introduction of technology at the appropriate time impacts the utility and effectiveness of digital health interventions, especially when they are integrated into existing health care systems and routines. Digital health apps need to account for existing medical conditions or medical history to ensure accurate and complete information. For example, technologies that do not provide an option to indicate current pregnancy are perceived as frustrating to users as the in-app goals or notifications can be irrelevant and inconsiderate of their current limitations. In a focus group, one mother shared the following:

I get frustrated with the Garmin [smartwatch] because I wear my watch during the night so it tracks my sleeping as well. Then it gives you like an insight—so a little note will pop up and you know whether your sleep has been really regular or you’ve had irregular sleep. I wish that there was a thing that during pregnancy where that I could put in and say I’m pregnant, because I got those notes that your sleep is really irregular, and I was like, “Because I’m pregnant!” [ 23 ]

Users who are not experiencing symptoms or who perceive their health to be good are less likely to adopt digital health tools as they may not perceive any benefit from using them. Moreover, those who are already tracking their health using other methods (eg, paper-based tracking) are less interested in trying a new digital health tool. Similarly, regarding wearables, some people may already have a wearable and be less interested in having an additional wearable device.

Theme 5: Impact on Community and Health Service

This theme considers the impact of PGHD on community and health service, with three subthemes: (1) communication and community support, (2) clinical integration, and (3) health care provider perspective.

Communication and Community Support

One of the many perceived benefits by users of digital health interventions is the sense of community that these platforms enable. Even though some women reported feeling uncomfortable sharing personal information with strangers in a virtual group, most found that the ability to connect with others who shared similar experiences provided a sense of belonging and support that was motivating and reassuring, as shared by one woman:

What I did love about the apps is the forums. So if you have a weird pain or, you know, you have cramp in your legs at three a.m., you can get on your phone straight away, and you can get support by the women who are going through the same thing. [ 41 ]

Discussion forums and social media platforms associated with digital health interventions are perceived as helpful for connecting with others, sharing personal stories, and receiving support. Digital health interventions can also help women elicit support from friends and family to stay motivated and achieve health goals. For example, researchers who reported on women’s experiences of an app for stress urinary incontinence shared that some participants found it easier to talk to friends about an app for pelvic floor muscle training rather than talk about incontinence [ 24 ]. This can enable increased accountability and further encourage adherence to the intervention. One woman spoke about how her family supported her engagement with a digital health intervention for physical activity maintenance among female cancer survivors:

My husband’s a good motivator. When I say I’m going for a walk, he’ll go with me...with my sister-in-law and her kids, it’s they want to go with me; so it’s how many steps have you got today? Or, are we going to go for a walk. That kind of thing. And with my husband and my daughter it’s, “how many steps did you get today, did you do your workout, let us get it going.” [ 36 ]

In addition to support from family, friends, and community members, these digital platforms can provide an alternative to speaking with a health care provider in person. Asynchronous communication with health care providers is helpful especially for those who may not have easy access to in-person visits or for those who are uncomfortable discussing sensitive information face-to-face. Records of PGHD can also improve the ability to gather and share details with health care providers about symptoms that are difficult to remember during an in-person visit.

Clinical Integration

Women are more willing to participate in digital health interventions if they perceive that they have a direct impact on their clinical care. They appreciate the idea that their health is being monitored and that someone is keeping an eye on their data. Furthermore, women want to see more integration of their clinical test results within their digital health apps and websites. This increases their motivation to adhere to the interventions prescribed through the digital health application.

It was noted that physicians and other health care providers play a crucial role in promoting the use of digital health interventions among patients. As noted in the following participant quote, women enjoy being able to communicate with a health care provider through digital health:

I like it because you can tell the doctor what’s going on and submit it to your doctor, that is the main reason I like it because you can talk directly to your doctor and tell them what is going on without going in or calling. [ 42 ]

Women are more likely to adopt and use technology if it is recommended by their health care providers, family members, or friends. Women reported that digital health interventions were more effective when they were supported by a health care team. For example, having access to a health coach or counselor or receiving feedback from a health care provider on their progress increases their motivation to adhere to the interventions. This support also provides reassurance that they are on the right track toward achieving their health goals. However, some patients become frustrated when they receive conflicting advice from the digital health tool and their health care provider.

Health Care Provider Perspective

Some articles included thoughts from health care providers on digital health tools collecting PGHD [ 20 , 37 , 43 - 55 ]. From the health care provider perspective, digital health can offer several benefits, including the ability to monitor patients’ adherence to treatment and interventions. This can be particularly helpful for patients with chronic conditions that require ongoing management. Providers can use digital health tools to track patients’ progress and identify any potential issues that may require further attention, which can lead to improved clinical outcomes and reduce unnecessary consultations. For instance, one provider learned about their patient’s anxiousness through a mobile health intervention:

I didn’t know my patient was feeling anxious...But when she wrote it down, we could talk about it... [ 43 ]

Some health care providers expressed that digital health tracking could give them a more accurate picture of their patients’ activities and adherence to treatments. In a study about perspectives on a sensor attached to pills that can send data such as date and time of ingestion, a provider commented the following:

A positive would be data and getting a better grip on compliance. (...) I’m making sure the patient is adhering - assuming that the patient is taking everything inside of that blister, you can have confirmation of that. [ 44 ]

In addition, digital health can improve the efficiency of care delivery by providing education and resources directly to patients. This can help patients better understand their condition, treatment options, and self-management strategies, which can lead to better health outcomes.

However, it was also noted that digital health interventions should not replace in-person visits but rather complement them. Some health care providers are concerned about overreliance on digital health tools as well as the potential for misinterpretation of the data they provide. There may be a lack of feedback on the correct use of interventions, such as interpretations of medical advice provided, and health care providers have raised concerns about the safety and trustworthiness of the medical advice generated by the digital health tools. Health care providers especially worry about medico-legal effects of having information from digital health tools taken out of context or without considering the full picture of the user’s history and health, as demonstrated in the following quotes:

As a health care professional, I’m just mindful that if there was a video of me up there talking, if that was taken out of context or shared with another person where that information was not appropriate, that’s a concern to me. [ 45 ]

One anesthesiologist raised, “Who has access to the responses that I provide? Because if a patient receives information from me which they hold onto and is taken out of context, in a medical–legal situation, then that’s a big issue as well.” [ 46 ]

Providers may also find that the abundance of information generated by digital health tools can be overwhelming and time-consuming to manage, adding to an already hectic workflow and blurring professional boundaries. Large volumes of alerts and notifications from digital health tools can be disruptive to health care providers, who expressed the need to set boundaries regarding how and when they engaged with digital health tools. In a study reporting on perspectives about digital health from key informants (health care providers and researchers), one participant shared their thoughts on the potential for digital health to increase workload and liability:

Sometimes the more information that we provide for them (doctors), the more work and liability we give them, right? So if they get so much information that becomes actionable but they are overwhelmed, now they would be obligated to do something with this patient, they are in a chain of distribution, a chain of liability. [ 44 ]

Theme 6: Impact on Health and Behavior

Finally, our sixth theme describes the impact of PGHD on health and health behaviors.

Several studies reported that digital health interventions helped users stay motivated and, in turn, improved their health habits and behaviors, such as adherence to medication, physical activity, and healthy eating. The ability of users to look back at their data helps them identify patterns in their health and behaviors, which increases their awareness of their health and habits. The awareness then allows them to be more mindful of their habits and encourages self-reflection, thus promoting a deeper understanding of their health and well-being. The tracking of patterns in their health, combined with the educational component of some digital health tools, helps users come up with better self-management strategies and feel more confident in their ability to reach their health goals, giving them a greater sense of self-efficacy and control over their health. In a digital health intervention aimed at treating lymphedema following breast cancer treatment, a participant spoke of changes in her awareness of symptoms and improvements:

It helped me realize that I had excess fluid. My arms got lighter each time I did the exercises. My arms began to feel less heavy. It noticed it in my clothes as well. [ 56 ]

Digital health interventions are often reported to positively impact the mental health and well-being of individuals. Women reported improvements in their mood, emotional state, and coping abilities. They also reported a reduction in stress and anxiety levels, which can lead to improvements in overall health outcomes. The digital health tools provide users with a sense of support and accountability as well as feelings of accomplishment when meeting their goals.

However, it is important to note that, while digital health interventions can have many benefits, they may not be suitable for everyone and may even have negative effects on some individuals. For example, some users reported increased anxiety due to excessive monitoring or notifications, and others reported negative effects on their thoughts or worsening of symptoms related to health conditions. Some users found that self-tracking made them more attached to their phones, less likely to engage in social activities, and more isolated overall. Care should be taken to ensure that users do not become obsessive about self-tracking as this can be counterproductive or even harmful. Being hyperfocused on their symptoms or health condition could be distressing and even detrimental to their overall well-being. Therefore, it is important to carefully monitor the use of digital health interventions and adjust them as needed to ensure the best possible outcomes for each individual. One woman spoke about her overreliance on an app used to track breastfeeding:

I stopped using it because um I thought I’m being too anal about this...being too concerned about it, I just need to stress less, and just go with the flow and just be a bit more relaxed about it...so, that’s why I stopped using it completely, and then I think the breastfeeding improved from there ’cause I was worrying about it less. [ 57 ]

Table 2 provides a summary of the thematic analysis grouped into barriers and facilitators. It is worth noting that many things are both a barrier and a facilitator (eg, cost) depending on the individual. In addition, the presence of a specific feature may be a facilitator, whereas the absence of it may be a barrier.

Principal Findings

In this scoping review, we summarized information from 406 articles on digital technologies collecting PGHD and how they have been used in women’s health research. We found a steady increase in articles meeting our inclusion criteria from 2015 to 2020, indicating an increasing trend in the uptake and use of digital health tools in women’s health research before the COVID-19 pandemic. Most included studies (310/406, 76.4%) were feasibility or acceptability studies, effectiveness studies, or reports of digital tool prototypes. Most studies (299/406, 73.6%) focused on tracking conditions related to pregnancy or the postpartum period, cancer survivorship, or menstrual, sexual, and reproductive health. Several types of digital health were represented, with the most common being apps, wearable devices, and websites or patient portals. Through our thematic analysis, we found several considerations of facilitators of and barriers to using digital health tools, including the accessibility and convenience of the tools, visual appearance, device functionality and ability to personalize the user experience, and accuracy of the algorithms and information provided. It is also important to consider the target audience to optimize the adoption of the tools. Engagement with digital health tools may help users improve their health and health-related behaviors and gather support from friends, family, and other digital health users. Women are more likely to use digital health if it is recommended by a health care provider, but there are both benefits and challenges that health care providers may face if considering integrating digital health technology into clinical practice.

A previously published scoping review focused on information and communications technologies as a tool for women’s empowerment [ 59 ]. They reported that the concept of empowerment appeared in various ways with no clear consensus on the definition, with some studies mentioning terms such as self-concept, self-esteem, self-worth, and self-efficacy. Our thematic analysis also found that some women’s use of digital health tools increases their self-efficacy in managing their health. Another systematic review of 13 digital health interventions for midlife women found that many interventions did not use a specific behavior change theory [ 60 ]. Our scoping review did not examine the effectiveness of the interventions described, but those designing digital health tools and interventions may want to carefully consider behavioral theories in the design to increase adoption and retention rates and adherence to interventions.

Overall, digital health technology to collect PGHD has gained popularity over the past several years. The integration of wearables, smartphones, and digital health technologies has enabled the integration of passive data collection. This wealth of data provides valuable insights into various aspects of health, enabling informed decisions and the adoption of proactive measures to improve well-being. The uptake of this technology will usher in a new era in how we manage our health and well-being. This transformation has changed how we engage with our health and shifted our perception of health and the approach we take toward maintaining it.

Femtech, as a subset of digital health technology, has grown in popularity. This was evidenced by the large increase in the number of articles published between 2015 and 2020 that used digital health tools to track metrics during pregnancy and the postpartum period as well as metrics related to menstrual, sexual, and reproductive health. These technologies empower women and people assigned female at birth to take charge of their health. This is particularly relevant for people with conditions that are not diseases or health concerns per se but are nevertheless part of managing their overall health and well-being. In this way, femtech can provide a greater sense of control over reproductive health and choices, which can be precarious in many settings worldwide. However, in a previous scoping review, researchers reported that many mobile health apps do not follow data privacy, sharing, and security standards [ 61 ]. Issues related to the privacy and security of personal health data may be especially important when it comes to tracking reproductive health in settings where sexual and reproductive health rights are not guaranteed. This focus on pregnancy and reproductive health is consistent with the fact that women’s health research has largely focused on reproductive health topics [ 62 ]. Researchers and digital health developers must address gaps in women’s health regarding areas that are not strictly related to reproductive health. Women’s health encompasses much more than obstetrics and gynecology; even for health conditions that affect men and women, there may be sex or gender differences in disease presentation, personal experiences, and treatment plans. While using gendered language and design in femtech has the potential to reinforce stereotypes regarding femininity that could cause harm [ 63 ], there is a need for apps to provide content relevant to female populations while being gender inclusive and conscious of biases in the language and advice presented.

When analyzing themes related to acceptability, personalization emerged as a key aspect influencing the adoption and sustained use of digital health tools. People respond positively and want to engage with tools that cater to their unique needs and preferences. The ability to customize elements such as the frequency of notifications, specific health measures tracked and displayed, goal-setting options, and the amount of health information provided enhanced user engagement and motivation. However, offering too many personalization options might overwhelm users, making apps or devices cumbersome to use and navigate. Simplicity and ease of use should not be compromised in the pursuit of personalization. Creating personalized experiences that are intuitive and user-friendly while integrating multiple functionalities into a given device is an important consideration. Recognizing that a “one-size-fits-all” approach is inadequate, digital intervention designers need to define their target audience clearly. Apps that cater to specific groups, such as those with certain chronic health conditions, may inherently provide a sense of personalization by addressing their unique requirements. We have also learned the importance of ensuring that the design is inclusive and accessible to everyone within the target audience. Our findings that some tools are not sensitive to certain circumstances such as pregnancy are consistent with those of a systematic review of digital health interventions for postpartum women, in which the authors reported that barriers related to postpartum status could make it more difficult to engage with the interventions [ 58 ]. Tools designed with these circumstances in mind may be more engaging for women during pregnancy and the postpartum period, leading to greater adoption and quality of the technologies. Attrition can be high among users of digital health interventions [ 64 , 65 ], but most participants were willing to self-track when motivated by a specific health condition.

An important finding of this review was the growing demand and expectation that PGHD are integrated with clinical care. As digital health continues evolving, patients seek more seamless interactions between digital health data and health care providers. Moreover, services delivered through digital health technologies were not expected to replace the role of health care professionals but rather to be a useful tool to support health care management. Maintaining the human touch during communication for health care delivery was seen as important, with technology complementing clinical care to enhance the overall experience for patients and providers.

One of the critical considerations in clinical integration is the accuracy of PGHD collected from digital health tools. Ensuring the reliability and validity of the data is essential for effective clinical decision-making. Striking a balance between patient empowerment and health care provider oversight is crucial to achieving the best possible outcomes. In general, it is important for health care providers to actively propose digital health during patient visits and encourage its use. While challenges and concerns associated with the use of digital health are noted from health care providers’ perspective, such as concerns about medico-legal effects, maintaining professional boundaries, and not adding an abundance of work, the benefits of these tools in supporting patient care and improving outcomes are perceived as important.

Strengths, Limitations, and Future Directions

There are some limitations to this scoping review. Our inclusion criteria did not cover conference abstracts, conference reviews, editorials, letters, comments, or gray literature. Our review also did not include articles written in languages other than English. Therefore, there may be other uses of PGHD in women’s health that were not captured in this review. The assessments of the quality of included articles, the effectiveness of the interventions, or the accuracy in validating PGHD were outside this review’s scope and were not performed. Our aim was to provide a broad overview of PGHD in published women’s health research literature rather than evaluating the quality of the digital technologies or intervention effectiveness. Another limitation is the rapid growth of digital health and femtech, especially during the COVID-19 pandemic. It is important to note that this scoping review only captures the use of PGHD in women’s health before the emergence of the pandemic. We suggest that this review may provide a baseline for comparison in a future scoping review that captures articles published in March 2020 or later. The strengths of this review include the large number of publications analyzed and the data charting process conducted in duplicate by 2 reviewers. The broad scope of this review also helps provide an overall picture of digital health for women and highlights gaps in the research literature.

Future endeavors in this space should consider digital health tools for women for nonreproductive topics such as chronic health conditions that primarily affect women or conditions that have sex or gender differences in presentation and treatment. Within reproductive health, there was a large focus on pregnancy, but there is an unmet need for research and digital health tools appropriate for women in perimenopause and menopause. A previous literature review found <5 articles published between 2010 and 2020 about digital health technologies that meet the psychosocial needs of women experiencing menopause [ 66 ]. There may also be further opportunities for digital health tools geared toward specific racial or ethnic groups that are culturally sensitive and available in multiple languages. A systematic review found that barriers to the use of digital health among culturally and linguistically diverse populations include lower literacy levels and the use of complex medical terminology in some apps, lack of recognition of cultural concerns, stereotypes, and inaccurate portrayals of cultural groups [ 67 ]. Previous scoping reviews in the space of women’s digital health have identified the need for femtech to pay more attention to cultural appropriateness and consider cultural contexts in their design [ 68 , 69 ].

Conclusions

In conclusion, the integration of wearables, smartphones, and other forms of digital health has revolutionized how we approach and engage with our health. Personalization, inclusivity, and integration with clinical care are vital aspects of developing effective digital health solutions. By understanding the needs of the target audience, providing meaningful personalization, and ensuring data accuracy, digital health can truly transform health care and empower individuals to take charge of their well-being while maintaining a collaborative relationship with health care professionals.

Acknowledgments

Thank you to Shannon Cheng, reference librarian, for her work in developing the search strategy and conducting the database searches. A big thank you to Dr Beth Payne for reviewing the manuscript draft and providing helpful feedback. AT is funded by a Michael Smith Health Research British Columbia Scholar award.

Data Availability

The data sets generated during this study are available in the OSF repository [ 70 ].

Authors' Contributions

JLK and AT conceived the study and designed the study protocol. JLK, RST, and AT conducted the article screening. JLK, RW, and RST conducted the data charting. JLK, RST, and DSC created the visualizations and tables of the charted data. The thematic analysis coding was conducted by JLK and RW, with additional discussions with AT in refining the themes. JLK, RST, and AT wrote the draft of the manuscript. All authors reviewed the manuscript before submission.

Conflicts of Interest

None declared.

PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) checklist.

Full search strategy.

List of included articles by health area.

Metrics collected in the included studies.

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Abbreviations

Edited by T de Azevedo Cardoso; submitted 04.10.23; peer-reviewed by D Liu, M Herron; comments to author 23.02.24; revised version received 15.03.24; accepted 26.03.24; published 16.05.24.

©Jalisa Lynn Karim, Rachel Wan, Rhea S Tabet, Derek S Chiu, Aline Talhouk. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 16.05.2024.

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