information system research article

Artificial Intelligence (AI) and Information Systems: Perspectives to Responsible AI

• Published: 23 December 2022
• Volume 25 , pages 1–7, ( 2023 )

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• Denis Dennehy 1 ,
• Anastasia Griva 2 ,
• Nancy Pouloudi 3 ,
• Yogesh K. Dwivedi 1 , 4 ,
• Matti Mäntymäki 5 &
• Ilias O. Pappas 6 , 7  

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1 Introduction

AI provides many transformational benefits to organisations across all industries and sectors (Alshahrani et al., 2021 ; Dennehy et al., 2022 ; Dwivedi et al., 2021 ; Elbanna et al., 2020 ; Vassilakopoulou et al., 2022 ). Recent studies have reported that AI can lead to new forms of business value (Enholm et al., 2022 ; Mikalef and Gupta, 2021 ), dynamic business-to-business relationships (Dwivedi and Wang, 2022 ; Keegan et al., 2022 ), enriched customer experiences (Jain et al., 2022 ; Griva et al., 2021 ; Kautish and Khare, 2022 ), enhanced human capabilities (Dwivedi et al., 2021 ), resilient supply chains (Zamani et al., 2022 ) and improved safety in the workplace (Gangadhari et al., 2022 ).

At the same time, there is a growing awareness of the risks and ethical issues surrounding AI (e.g., Bryson, 2018 ; Jobin et al., 2019 ) and the need to move from ethical principles to implementable practices (Schneiderman, 2021; Mäntymäki et al., 2022a ; Seppälä et al., 2021 ) through for example the responsible design (Dennehy et al., 2021 ) and governance (Mäntymäki et al., 2022b ) of AI systems. While organisations are increasingly investing in ethical AI and Responsible AI (RAI) (Zimmer et al., 2022 ), recent reports suggest that this comes at a cost and may lead to burnout in responsible-AI teams (Heikkilä, 2022 ). Thus, it is critical to consider how we educate about RAI (Grøder et al., 2022 ) and rethink our traditional learning designs (Pappas & Giannakos, 2021 ), as this can influence end-users’ perceptions towards AI applications (Schmager et al., 2023 ) as well as how future employees approach the design and implementation of AI applications (Rakova et al., 2021 ; Vassilakopoulou et al., 2022 ).

The use of algorithmic decision-making and decision-support processes, particularly AI is becoming increasingly pervasive in the public sector, also in high-risk application areas such as healthcare, traffic, and finance (European Commission, 2020). Against this backdrop, there is growing concern over the ethical use and safety of AI, fuelled by reports of ungoverned military applications (Butcher and Beridze, 2019 ; Dignum, 2020 ), privacy violations attributed to facial recognition technologies used by the police (Rezende, 2022 ), unwanted biases exhibited by AI applications used by courts (Imai et al., 2020 ), and racial biases in clinical algorithms (Vyas et al. 2020 ). The opacity and lack of explainability frequently attributed to AI systems makes evaluating the trustworthiness of algorithmic decisions challenging even for technical experts, let alone the public. Together with the algorithm-propelled proliferation of misinformation, hate speech and polarising content on social media platforms, there is a high risk for erosion of trust in algorithmic systems used by the public sector (Janssen et al., 2020 ). Ensuring that people can trust in the algorithmic processes is essential not only for reaping the potential benefits from AI (Dignum, 2020 ) but also for fostering trust and resilience at a societal level.

AI researchers and practitioners have expressed their fears about AI systems being developed that are non-inclusive and enhance inequalities. There are known cases in which AI systems do not always make ethical or accurate choices (Babic et al., 2021 ) and biased or inaccurate data are used to train the AI algorithms which increase the risk of inequalities and injustice (Agrawal et al., 2020 ). For example, Amazon Footnote 1 trained their AI recruiting tool using masculine language, and thus the tool inherited bias against curriculum vitae submitted by women. This ‘bias in – bias out’ in AI models embeds the danger of inclusion. Nikon, is another example that illustrates this danger of inclusion. The company trained their AI model which identified people blinking excluding Asian people Footnote 2 . There are several examples of discrimination in AI applications which impose the need of critical thinking to question the AI results since it seems inevitable to completely regulate the AIs, which are in essence human opinions embedded in algorithms.

Researchers and practitioners state that these fears can be addressed and AI can be more inclusive – by designing ‘human-AI hybrids’ (Rai et al., 2019 ). In this context, researchers highlight the need to create Ambient Intelligent (AmI) AI systems to amplify AI-human collaboration (Gams et al., 2019 ). In such environments the AI system will interact with humans, receive information and learn from them and the environments (Ramos et al., 2008 ). From a different perspective converting the AI ‘black boxes’ to ‘glass boxes’(Rai, 2020 ) and creating AI applications that inherit explainable features (XAI) can also facilitate inclusiveness in AI, as this transparency can make it easier to reduce the biases.

AI, like all technology, can be used in diverse ways and users may appropriate the technology in means that designers have not intended (Zamani and Pouloudi, 2020 ; Zamani et al., 2020 ). Thus, designers need to consider the intended and unintended consequences (Ransbotham et al., 2016 ; Majchrzak et al., 2016 ), by focusing on responsibility and ethical aspects to support this process. The Information Systems (IS) discipline has a sustained record of raising and addressing ethical concerns about IS, and technologies in general (e.g., Mason, 1986 ; Banerjee et al., 1998 ; Smith & Hasnas, 1999 ; Davison, 2000 ; Mingers & Walsham, 2010 ; Niederman, 2021 ). This special issue follows this cumulative tradition of academic discourse and knowledge by seeing vistas beyond technology (Stoodley et al., 2010 ), specifically AI.

2 The Special Issue

In this special issue, we were particularly interested in theory-building studies and empirically grounded theorising related to AI as a technology for an ethical and inclusive society. Following a rigorous review process consisting of a minimum of two and a maximum of four rounds of review, nine articles were selected to be included in this special issue. Each of the selected articles bring a distinct perspective to the emerging IS discourse on AI governance, ethics, and society. Collectively, the articles advance understanding of the socio-technical aspects of AI and its implications for society. The remainder of this editorial briefly describes the contributions that each of the selected articles made to advancing knowledge on AI for an ethical and inclusive society.

Niederman & Baker ( 2023 ) provide a reflective perspective on how ethical issues related to AI differ from other technologies. Specifically, they differentiate AI ethics issues from concerns raised by all IS applications by presenting three distinct categories of which AI ethics issues can be viewed. One can view AI as another IS application like any other. They examine this category of AI applications focusing primarily on Mason’s ( 1986 ) PAPA framework, comprised of privacy , accuracy , property , and accessibility , as a way to position AI ethics within the IS domain. One can also view AI as adding a generative capacity to produce outputs that cannot be pre-determined from inputs and code. They examine this by adding ‘inference’ to the informational pyramid and exploring its implications. AI can also be viewed as a basis for re-examining questions of the nature of mental phenomena such as reasoning and imagination. At this time, AI-based systems seem far from replicating or replacing human capabilities. However, if/when such abilities emerge as computing machinery continues growing in capacity and capability, it will be helpful to have anticipated arising ethical issues and developed plans for avoiding, detecting, and resolving them to the extent possible.

Dattathrani & De ( 2023 ) make a strong argument that with the new generation of technologies, such as AI, the notion of agency needs to differentiate between the actions of AI from that of traditional information systems and humans. Indeed human and material agency have been investigated in the IS literature to understand how technology and humans influence each other. Some framings of agency, however, treat humans and technology symmetrically, some privilege the agency of humans over technology, and others do not attribute agency to either humans or non-humans. The authors introduce the dimensions of agency to differentiate agencies while not privileging any actor. They illustrate the application of dimensions by using it as a lens to study the case of a technician using an AI solution for screening patients for early-stage breast cancer. Through the use of the dimensions of agency, they illustrate how the influence of AI over human practice, such as screening for early-stage breast cancer, is higher than the influence of traditional technology. Their study makes contributions to the theory of agency and concludes with a discussion on potential practical applications of the framework.

Harfouche et al., ( 2023 ) highlight that despite the hype surrounding AI, there is a paucity of research that focuses on the potential role of AI in enriching and augmenting organisational knowledge. The authors develop a recursive theory of knowledge augmentation in organisations (the KAM model) based on a synthesis of extant literature and a four-year revised canonical action research project. The project aimed to design and implement a human-centric AI (called Project) to solve the lack of integration of tacit and explicit knowledge in a scientific research centre (SRC). To explore the patterns of knowledge augmentation in organisations, this study extends Nonaka’s knowledge management model which includes socialisation, externalisation, combination, and internalisation, by incorporating the human-in-the-loop Informed Artificial Intelligence (IAI) approach. Their proposed design offers the possibility to integrate experts’ intuition and domain knowledge in AI in an explainable way. The findings show that organisational knowledge can be augmented through a recursive process enabled by the design and implementation of human-in-the-loop IAI. The study has important implications for both research and practice.

Koniakou ( 2023 ) engages in the discourse of AI governance from three angles grounded in international human rights law, namely, Law and Technology, Science and Technology Studies (STS), and theories of technology. The author posits that by focusing on the shift from ethics to governance, it offers a bird-eye view of the developments in AI governance, focusing on the comparison between ethical principles and binding rules for the governance of AI, and critically reviewing the latest regulatory developments. Further, by focusing on the role of human rights, it takes the argument that human rights offer a more robust and effective framework a step further, arguing for the necessity to extend human rights obligations to also directly apply to private actors in the context of AI governance. This study offers insights for AI governance borrowing from the Internet Governance history and the broader technology governance field.

Minkkinen et al., ( 2023 ) focus on addressing a gap in knowledge related to the governing AI which requires cooperation, yet the collaboration’s form remains unclear. Technological frames provide a theoretical perspective for understanding how actors interpret technology and act upon its development, use, and governance. However, there is limited knowledge about how actors shape technological frames. The authors examine the shaping of the technological frame of the European ecosystem for responsible AI (RAI). Through an analysis of EU documents, we identified four expectations that constitute the EU’s technological frame for the RAI ecosystem. Moreover, through interviews with RAI actors, we revealed five types of expectation work responding to this frame: reproducing, translating, and extending (congruent expectation work), and scrutinising and rooting (incongruent expectation work). The authors conceptualise expectation work as actors’ purposive actions in creating and negotiating expectations. Their study contributes to the literature on technological frames, technology-centred ecosystems, and RAI while also elucidating the dimensions and co-shaping of technological frames.

Papagiannidis et al., ( 2023 ) highlight that despite the use of AI, companies still face challenges and cannot quickly realise performance gains. Adding to the above, firms need to introduce robust AI systems and minimise AI risks, which places a strong emphasis on establishing appropriate AI governance practices. In this paper, we build on a comparative case analysis of three companies from the energy sector and examine how AI governance is implemented to facilitate the development of robust AI applications that do not introduce negative effects. The study illustrates which practices are placed to produce knowledge that assists with decision-making while at the same time overcoming challenges with recommended actions leading to desired outcomes. The study contributes by exploring the main dimensions relevant to AI’s governance in organisations and uncovering the practices that underpin them.

Polyviou & Zamani ( 2023 ) acknowledge that AI promises to redefine and disrupt several sectors. At the same time, AI poses challenges for policymakers and decision-makers, particularly regarding formulating strategies and regulations to address their stakeholders’ needs and perceptions. This paper explores stakeholder perceptions as expressed through their participation in the formulation of Europe’s AI strategy and sheds light on the challenges of AI in Europe and the expectations for the future. The findings reveal six dimensions of an AI strategy; ecosystems, education, liability, data availability sufficiency and protection, governance, and autonomy. It draws on these dimensions to construct a desires-realities framework for AI strategy in Europe and provide a research agenda for addressing existing realities. Their study advances the understanding of stakeholder desires on AI and holds important implications for research, practice, and policymaking.

Another interesting, yet theoretically underdeveloped application of AI is the use of AI-powered chatbots in the context of education and the experiences of students who use them. Chen et al., ( 2023 ) make the case that chatbots are increasingly used in various scenarios such as customer service, work productivity, and healthcare, which might be one way of helping instructors better meet student needs. However, few empirical studies in the field of IS have investigated pedagogical chatbot efficacy in higher education, and fewer still discuss their potential challenges and drawbacks. In this research, the authors address this gap in the IS literature by exploring the opportunities, challenges, efficacy, and ethical concerns of using chatbots as pedagogical tools in business education. In this two-study project, they conducted a chatbot-guided interview with 215 undergraduate students to understand student attitudes regarding the potential benefits and challenges of using chatbots as intelligent student assistants. The findings of this study reveal the potential for chatbots to help students learn basic content in a responsive, interactive, and confidential way. The findings also provided insights into student learning needs which we then used to design and develop a new, experimental chatbot assistant to teach basic AI concepts to 195 students. Results of this second study suggest chatbots can be engaging and responsive conversational learning tools for teaching basic concepts and for providing educational resources. The authors discuss possible promising opportunities and ethical implications of using chatbots to support inclusive learning.

Despite the concerns raised by scholars and practitioners about AI, the pervasiveness of social recommender systems (SRSs) in e-commerce platforms highlights a trend that consumers who are willing to delegate their decisions to algorithms (Schneider & Leyer, 2019 ). SRS are increasingly becoming embedded in e-commerce ecosystems due to their ability to reduce consumers’ decision time and effort by filtering out excess information and providing personalised recommendations (Tsai & Brusilovsky, 2021). As previous studies have largely focused on the technical aspects of the recommendation systems, there is limited understanding about the nature of the social information that improves the recommendation performance (Shokeen & Rana, 2020 ).

Bawack & Bonhoure ( 2023 ) investigate this phenomenon to identify the behavioural factors that influence consumers’ intention to purchase products or brands recommended by SRSs. The authors adopt a meta-analytic research approach to conduct an aggregative literature review that uses quantitative methods to test specific research hypotheses based on prior empirical findings. Through the analysis of 72 articles, the authors identify 52 independent variables which are organised into 12 categories. Emerging from the analysis of the articles the authors propose a theoretical model on the behavioural factors that affect consumers’ intentions to purchase products recommended by SRSs. As the study has important implications for research, the authors provide an agenda for future research that could advance theory-building efforts and theory-driven designs in SRS research and practice.

Each of the articles of this special issue, as well as other recent studies (e.g., Akter et al., 2021 ; Bankins et al., 2022 ; Gupta et al., 2022 ; Shneiderman, 2021 ) have advanced knowledge on the ethical issues and governance of AI. Despite these important contributions, significant learning remains about how to use AI for social good (Ashok et al., 2022 ; Coombs et al., 2021 ; Dwivedi et al., 2021 ; Kumar et al., 2021 ; Fossa Wamba et al., 2021 ). To this end, we make a call for future research. First, there is a need for a concerted effort within and between academic disciplines (e.g., IS, arts, engineering), policymakers, governments, and the wider society to discover innovative ways to use AI to achieve the sustainable development goals (SDGs). Second, while significant attention has been given to understanding the application of AI in a variety of contexts, there is a limited discourse about how to use AI for future-oriented inquiry, whereby IS researchers can explore future scenarios through immersive virtual experiences to better understand how to design resilient IS and incorporate these insights in future-oriented inquiry (Brooks & Saveri, 2017 ; Chiasson et al. 2018 ). Third, future scholarship on AI governance could investigate auditing of AI systems (Minkkinen et al., 2022 b) as a mechanism to foster transparency, accountability, and trust.

We hope that this special issue provides scholars with a foundation in which integrity and rigor for scientific research will promote high-quality IS, and ethical principles will translate into professional and organisational practice (Calzarossa et al., 2010 ; Mäntymäki et al., 2022a ).

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Acknowledgements

The guest editors would like to express our appreciation to Professor Ram Ramesh and Professor Raghav Rao, Editors-in-Chief of Information Systems Frontiers , for their support and guidance from the initial proposal to the production of this special issue. We also want to thank the contributing authors for their contributions to the accumulative building of knowledge on AI in a digitised society. Finally, we want to thank the reviewers, as their developmental feedback significantly contributed to the quality of accepted papers.

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ISTLab, Athens University of Economics and Business, Athens, Greece

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Department of Management, Symbiosis Institute of Business Management, Pune & Symbiosis International (Deemed University), Pune, India

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Dennehy, D., Griva, A., Pouloudi, N. et al. Artificial Intelligence (AI) and Information Systems: Perspectives to Responsible AI. Inf Syst Front 25 , 1–7 (2023). https://doi.org/10.1007/s10796-022-10365-3

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A Systematic Literature Review of Health Information Systems for Healthcare

Ayogeboh epizitone.

1 ICT and Society Research Group, Durban University of Technology, Durban 4001, South Africa

Smangele Pretty Moyane

2 Department of Information and Corporate Management, Durban University of Technology, Durban 4001, South Africa

Israel Edem Agbehadji

3 Centre for Transformative Agricultural and Food Systems, School of Agricultural, Earth and Environmental Sciences, University of KwaZulu-Natal, Pietermaritzburg 3209, South Africa

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Health information system deployment has been driven by the transformation and digitalization currently confronting healthcare. The need and potential of these systems within healthcare have been tremendously driven by the global instability that has affected several interrelated sectors. Accordingly, many research studies have reported on the inadequacies of these systems within the healthcare arena, which have distorted their potential and offerings to revolutionize healthcare. Thus, through a comprehensive review of the extant literature, this study presents a critique of the health information system for healthcare to supplement the gap created as a result of the lack of an in-depth outlook of the current health information system from a holistic slant. From the studies, the health information system was ascertained to be crucial and fundament in the drive of information and knowledge management for healthcare. Additionally, it was asserted to have transformed and shaped healthcare from its conception despite its flaws. Moreover, research has envisioned that the appraisal of the current health information system would influence its adoption and solidify its enactment within the global healthcare space, which is highly demanded.

1. Introduction

Health information systems (HIS) are critical systems deployed to help organizations and all stakeholders within the healthcare arena eradicate disjointed information and modernize health processes by integrating different health functions and departments across the healthcare arena for better healthcare delivery [ 1 , 2 , 3 , 4 , 5 , 6 ]. Over time, the HIS has transformed significantly amidst several players such as political, economic, socio-technical, and technological actors that influence the ability to afford quality healthcare services [ 7 ]. The unification of health-related processes and information systems in the healthcare arena has been realized by HIS. HIS has often been contextualized as a system that improves healthcare services’ quality by supporting management and operation processes to afford vital information and a unified process, technology, and people [ 7 , 8 ]. Several authors assert this disposition of HIS, alluding to its remarkable capabilities in affording seamless healthcare [ 9 ]. Haux [ 10 ] modestly chronicled HIS as a system that handles data to convey knowledge and insights in the healthcare environment. Almunawar and Anshari [ 7 ] incorporated this construed method to describe HIS to be any system within the healthcare arena that processes data and affords information and knowledge. Malaquias and Filho [ 11 ] accentuated the importance of HIS in the same light, highlighting its emergence to tackle the need to store, process, and extract information from the system data for the optimization of processes, enhancing services provided and supporting decision making.

HIS’s definition was popularized by Lippeveld [ 12 ], and reported to be an “integrated effort to collect, process, report and use health information and knowledge to influence policy-making, programme action and research”. Over the course of time, this definition has been adopted and contextualized countlessly by many authors and the World Health Organization (WHO) [ 3 , 8 , 13 , 14 , 15 ]. Although Haule, Muhanga [ 8 ] claimed the definition of HIS varies globally, in actuality, the definition has never changed from its inception, but on the contrary, it has been conceptualized over various contexts. Malaquias and Filho [ 11 ] reiterated this definition in the extant literature. These scholars affirmed HIS as “a set of interrelated components that collect, process, store and distribute information to support the decision-making process and assist in the control of health organizations” [ 11 ]. The same definition is adopted in this paper, and HIS is construed as “a system of interrelated constituents that collect, process, store and distribute data and information to support the decision-making process, assist in the control of health organizations and enhance healthcare applications”. However, it is paramount to note that HIS is broad. In many instances, the definition is of minimal relevance due to its associated incorporation with external applications related to health developments and policy making [ 16 ]. Hence, emphasis should not be placed on the definition but on its contribution to all facets of health development.

The current state of HIS is considered to be inadequate despite its numerus deployment of HIS that has been driven by its potential benefit to uplift healthcare and revolutionize its processes [ 17 , 18 ]. The persistence of many constraints and resistance to technology has resulted to the incapacitation of HIS in the attainment of its objectives. The extant literature reveals several challenges in different categories, such as the inadequacy of human resources and technological convergence within the healthcare [ 18 ], highlighting the evidence of limitations of HIS that restrict their utilization and deployment within the healthcare. Although several authors identified the unique disposition of HIS in integrating care and unifying the health process, these perspectives seems to be marred by the presence of barriers [ 17 , 19 ]. Garcia, De la Vega [ 17 ] alleged that the current HIS deployment is characterized by fragmentation, update instability, and lack of standardization that limit its potential to aid healthcare. Congruently, several authors associated the lack of awareness of HIS potential, the underuse HIS, inadequate communication network, and security and confidentiality concerns among the barriers limiting HIS [ 20 ]. Thus, the need for this paper is set forth: to uncover current and pertinent insights on HIS deployment as a concerted effort to strengthen it and augment its healthcare delivery capabilities. This paper comprehensively explores the extant literature systematically with respect to the overarching objective: to ascertain value insights pertaining to HIS holistically from literature synthesis. To achieve this goal, the following research questions are investigated: What has been the development of the HIS since its conception? How has HIS been deployed? Finally, how does HIS enable information and knowledge management in healthcare?

In this paper, an overview HIS from the extant literature in relation to the health sector is presented with associated related work. It is essential to point out that in spite of the surplus of research work conducted on health information systems, there are still many challenges confronting it within the healthcare area that necessitate the need for this study [ 5 ]. Therefore, the extant literature is explored in this paper systematically to uncover current and pertinent insights surrounding the deployment of the HIS, an integrated information system (IS) for healthcare. This paper is structured into five sections. The paper commences with an introductory background that presents the contextualization of HIS for healthcare, followed by a methodology that details the method and material used in this study. The next section, which is the discussion, presents the discourse of HIS evolution that highlights its progress to date, its structural deployment, and the information system and knowledge management within the healthcare arena as mediated by HIS. The last part of this study focuses on the conclusion that summarizes the discussion presented in this paper.

2. Material and Method

In this paper, a systematic review is conducted to synthesize the extant literature and analyze the content to ascertain the value disposition of HIS in relation to healthcare delivery. Preceding this review, the used of search engines was employed to retrieve related research publications that fit the study scope and contexts. The main database used was the Web of Science . Other databases such as SCOPUS and Google Scholar were also used to obtain additional relevant work associated with the context. For inclusion criteria, only articles containing references to the keywords HIS, information, healthcare, and related healthcare systems were analyzed scrupulously. Research work that did not have these references, did not constitute a journal or conference-proceeding work, and were not written in the English language were excluded. Figure 1 , the PRISMA flow statement, illustrates the methodological phases of this research along with the exclusion and inclusion criteria that were implemented for the study synthesis.

Prisma flow Statement.

3. Discussion

3.1. the evolution of health information systems.

The concept of enhancing healthcare applications has always been the foundation of HIS, which posits that the intercession of information systems with business processes affords better healthcare services [ 7 , 21 ]. According to Almunawar and Anshari [ 7 ], many determinants, such as technological, political, social and economic, have enormously influenced the nature of the healthcare industry. The technological determinant, particularly the computerized component, is thought to be deeply ingrained in the enactment and functioning of HIS. According to Panerai [ 16 ], this single attribute can be held solely responsible for HIS letdowns rather than its accomplishment.

The ownership of HIS has been contested in the literature, with some authors claiming that HIS belongs to the IT industries [ 22 ]. While IT has enabled many developments in various industries, it has also resulted in many dissatisfactions. Recently, there has been an insurgence from many industries, particularly the healthcare industries, who acknowledge the role of IT in optimizing and enhancing health initiatives but want appropriation of their integrated IS. However, according to the definition of HIS, it is presented as “a set of interconnected components that collect, process, store, and distribute information to support decision-making and aid in the control of health organizations”; thus, the disposition of HIS was established. Without bias, the development of HIS was conceived due to unavoidable changes and transformations within the global space.

A good representation and consolidation of this dispute are within the realization that there is a co-existence of different related and non-related components in a system. In this case, the HIS is an entrenched system with several features, including technologies. Panerai [ 16 ] supported this notion and theorized HIS to be broad, stating that the relevance of its definition is contextual. In the study, HIS was reiterated as any kind of “structured repository of data, information, or knowledge” that can be used to support health care delivery or promote health development [ 16 ]. Thus, maintaining a rigid definition is of minimal practical use because many HIS instances are not directly associated with health development, such as the financial and human resource modules. Moreover, several different HIS examples are categorized according to the functions they are dedicated to serving within the healthcare arena. They highlight the instances of the existence of outliers that are not regarded as the normal HIS even though they contain health determinants data, such as socioeconomic and environmental, which can be used to formulate health policies.

The development of HIS over the years has led many to believe they are solely computer technology. This notion has contributed dramatically to the misconception of the origin of HIS and the lack of peculiarity between the HIS conceptual structure and implemented HIS technology. The literature dates back the origin of HIS, which can be associated with the first record of mortality in the 18th century, revealing their existence to be 200 years or older than the invention of computers [ 16 ]. This demonstrates the emergence of digitalized HIS from the availability of commercialized episodes of “electronic medical records” EMR records in the 1970s [ 23 ]. Namageyo-Funa, Aketch [ 24 ] commended the advancement of technologies in the healthcare arena, recounting the implementation of digitalized HIS that significantly revolutionized the recording and accessing of health information. A study by Lindberg, Venkateswaran [ 25 ] highlighted an instance of HIS transition from paper based to digitally based, revealing a streamlined workflow that revolutionized health care applications in the healthcare arena. This HIS transition over the course of time has led to increased adoption of it within the health care arena. Tummers, Tekinerdogan [ 26 ] highlighted the landmark of HIS from its transition to digitalization and reported a current trend in healthcare that has now been extended with the inclusion of block chain technology within the healthcare arena. Malik, Kazi [ 27 ] assessed HIS adoption in terms of technological, organizational, human, and environmental determinants and reported a variation of different degrees of utilization. Despite these facts, the extant literature maintains the need for a resilient and sustainable HIS for health care applications within the healthcare arena at all levels [ 18 , 27 , 28 ].

Figure 2 illustrates the successful adoption of HIS amidst the significant determinants of its effectiveness. From the Figure 2 , the technological, organizational, human, and environmental determinants are the defining concepts along with individual sub-determinants in each domain that influence HIS adoption. At the technological level, the need for digitalization drives HIS adoption, especially for stakeholders such as clinicians and decision makers. The administrative, management, and planning functions are the driving actors within the organization level that endorse the implementation of HIS. The environmental and human determinants are more concerned with the socio-technical components that have been regarded as complex drivers for HIS adoptions. Perceptions, literacy, and usability are known forces within these categories that necessitate the adoption of HIS in many healthcare arenas.

Effective health information system associations with the driving adoption determinants. Source: [ 27 ].

3.2. HIS Structural Deployment

HIS’s unified front is geared toward assimilating and disseminating health gen to enhance healthcare delivery. HIS consists of different sub-systems that serve several actors within the healthcare arena [ 29 ]. These sub-systems are dedicated to specific tasks that perform various functions such as civil registrations, disease surveillance, outbreak notices, interventions, and health information sharing within the healthcare arena. It also supports and links many functions and activities within the healthcare environment, such as recording various data and information for stakeholders, scheduling, billing, and managing. Stakeholders are furnished with health information from diverse HIS scenarios. These include but are not limited to information systems for hospitals and patients, health institution systems, and Internet information systems. Sligo, Gauld [ 30 ] regarded HIS as a panacea within the healthcare ground that improves health care applications. Despite all the limitless capabilities of HIS, it has been reported to be asymmetrical, lacking interactions within subsystems [ 1 , 18 ]. Many decision making methods and policies rely on good health information [ 31 ]. According to Suresh and Singh [ 32 ], the HIS enables stakeholders such as the government and all other players in the healthcare arena to have access to health information, which influences the delivery of healthcare. The sundry literature further reveals accurate health information to be the foundation of decision making and highlights the decisive role of the human constituent [ 29 , 31 , 33 , 34 ].

Furthermore, HIS can be classified into two cogs in today’s era: the computer-related constituent that employs ICT-related tools and the non-computer component, which both operate at different levels. These levels include strategic, tactical, and operational. The deployment of HIS at the strategic level offers intelligence functions such as intelligent decision support, financial estimation, performance assessment, and simulation systems [ 3 , 35 ]. At the tactical level, managerial functions are performed within the system, while at the operational level, functions including recording, invoicing, scheduling, administrative, procurement, automation, and even payroll are carried out. Figure 3 shows the three levels within the healthcare system where HIS deployment is utilized.

Levels of HIS deployment: source authors.

3.3. Health Information Systems Benefits

HIS, as an interrelated system, houses several core processes and branches in the healthcare arena, affording many benefits. Among these are the ease of access to patients and medical records, reduction of costs and time, and evidence-based health policies and interventions [ 8 , 21 , 36 , 37 , 38 ]. Several authors revealed the benefits of HIS to be widely known and influential within the healthcare domain [ 38 ]. Furthermore, many health organizations are drawn to HIS because of these numerous advantages [ 22 , 39 ]. Moreover, investment in HIS has enabled effective decision making, real-time comprehensive health information for quality health care applications, effective policies in the healthcare arena, scaled-up monitoring and evaluation, health innovations, resource allocations, surveillance services, and enhanced governance and accountability [ 36 , 40 , 41 , 42 ]. Ideally, HIS is pertinent for data, information, and broad knowledge sharing in the healthcare environment. HIS critical features are now cherished due to their incorporation with diverse technology [ 16 , 43 ]. The extant literature reveals the role of HIS to extend beyond its reimbursement. Table 1 presents a summarized extract of various HIS benefits as captured in the literature and some of its core enabling components or instances.

HIS core enabling components and its benefits.

3.4. Information System and Knowledge Management in the Healthcare Arena

The presence of modernized information systems (IS) in the healthcare arena is alleged by scholars to be a congested domain that seldom fosters stakeholders’ multifaceted and disputed relationships [ 48 ]. On the other hand, it is believed that a significant amount of newly acquired knowledge in the field of healthcare is required for the improvement of health care [ 49 ]. Ascertaining and establishing the role of IS and knowledge management is an important step in the development of HIS for healthcare. Flora, Margaret [ 5 ] posited that efficient IS and data usage are crucial for an effective healthcare system. Bernardi [ 50 ] alleged that the underpinning inkling of a “robust and efficient” HIS enables healthcare stakeholders such as managers and providers to leverage health information to commendably plan and regulate healthcare, which could result in enhanced survival rates. As a result, it is imperative to ground these ideas within the context of the healthcare industry to provide a foundation for developing a robust and sustainable HIS for use in the context of health care applications.

3.4.1. Information System

The assimilation and dissimilation of health information and data within the healthcare system is an important task that influences healthcare outcome. Within the healthcare setting, IS plays a significant role in the assimilation and dissimilation of health information needed by healthcare stakeholders. Many continents endorse the deployment of IS mainly to consolidate mutable information from different sources within the systems. The primary objective for these systems’ deployment has been centered on bringing together unique and different components such as institutions, people, processes, and technology in the system under one umbrella [ 5 , 51 ]. An overview of the extant literature reveals that this has rarely been easy, as integration within this system has always been difficult in many contexts. In the context of HIS, many reported the integration phenomena to be problematic, attributing this to the global transformation within the healthcare arena [ 52 , 53 ]. This revolution, coupled with the advancement of the healthcare arena, has resulted in the need for robust allied health IS systems that incorporates different IS and information technology [ 5 , 22 ]. These allied health information systems are necessary to consolidate independent information systems within their healthcare arena use to enhance healthcare applications [ 54 , 55 ]. Organizations in the healthcare arena expect these systems to be sustainable and resilient; however, in order to satisfy these requirements, an integrated information system is needed to unify all independent, agile, and flexible health IS to mitigate challenges for HIS [ 56 ].

An aligned HIS that is allied is essential, as it supports health information networks (HIN) that subsequently enhance and improve healthcare applications [ 44 , 57 ]. Thus, many organizations within the healthcare settings are fine-tuning their HIS to be resilient and sustainable. However, the realization of a robust information system within the healthcare arena is challenging and depends on the flow of information as a crucial constituent for suave and efficient functioning [ 58 , 59 ].

3.4.2. Knowledge Management

The process of constructing value and generating a maintainable edge for an industry with capitalization on building, communicating, and knowledge applications procedures to realize set aspirations is denoted as knowledge management [ 60 ]. The literature reveals knowledge management as an important contributor to organizational performance through its knowledge-sharing capabilities [ 61 ]. In the healthcare industry, there is a high demand for knowledge to enhance healthcare applications [ 49 , 62 ]. Several studies reported that the deployment of knowledge management in the healthcare arena is set to enhance healthcare treatment effectiveness [ 49 , 58 , 61 ]. Many stakeholders such as governments, World Health Organization (WHO), and healthcare workers rely on the management of healthcare knowledge to complement healthcare applications. According to Kim, Newby-Bennett [ 61 ], the focus of knowledge management is to efficaciously expedite knowledge sharing. However, integrating knowledge from different sources is challenging and requires an enabler [ 61 ].

The HIS is an indispensable enabler of health knowledge generated from amalgamated health information within the healthcare arena [ 63 , 64 , 65 ]. Dixon, McGowan [ 66 ] asserted that efficacious modifications in the healthcare arena are made possible by knowledge codification and collaboration from information technologies. Similarly, some authors have pinpointed information and communication technologies within the healthcare arena to be a major determinant in the attainment of a sustainable health system development [ 58 ]. The knowledge management relationship with HIS is considered complementary and balanced, as it enables the availability of knowledge that can be shared. The importance of knowledge management is relevant for the realization of an enhanced healthcare application via HIS. Soltysik-Piorunkiewicz and Morawiec [ 58 ] claimed that the information society effectively uses HIS as an information system for management, patient knowledge, health knowledge, healthcare unit knowledge, and drug knowledge. The authors herein demonstrated how HIS facilitates knowledge management in the healthcare sector to improve healthcare applications.

The role of HIS as an integrated IS and key enabler of healthcare knowledge management highlights its potential within the healthcare arena. From the conception of HIS and the records of its evolution, significant achievements have been attained that are demonstrated at different levels of its structural deployment. HIS deployment in several settings of healthcare have positively influenced clinical processes and patients’ outcomes [ 17 ]. Globally, the need for HIS within the healthcare system is critical in the enhancement of healthcare. Many healthcare actions are dependent on the use of HIS [ 67 , 68 , 69 ]. This demand is substantiated by the offerings of HIS in tackling the transformation and digitalization confronting the healthcare system. However, despite the need for HIS and its potential within healthcare, several barriers limit its optimization. Some authors posited the role and involvement of healthcare professionals such as physicians to be important measure that is paramount to decreasing the technical and personal barriers sabotaging HIS deployment [ 20 ]. Nonetheless, the design of HIS is accentuated on augmenting health and is considered to be lagging behind in attaining quality healthcare [ 70 ].

Although there are equal blessings as well as challenges with HIS deployment, this study appraisal of HIS highlights its capabilities and attributes that enhance healthcare in many ways. From its conception, HIS has evolved significantly to enable the digitalization of many healthcare processes. Its deployment structurally has facilitated many healthcare applications at all levels within the health system where it has been implemented. Many benefits such as ease of access to medical records, cost reduction, data and information management, precision medicine, and autonomous and intelligent decisions have been enabled by HIS deployment. Primarily, HIS is the core enabler of the healthcare information system and knowledge management within the healthcare arena. Ascertaining the attributes and development of HIS is a paramount to driving its implementation and realizing its potential. Many deployments of HIS can be anchored on this study as a reference for planning and executing HIS implementation. The extant literature points out the need for the role of technology such HIS to be ascertained, as little is known in this regard, which as a result has adversely influenced healthcare coordination [ 19 ]. Additionally, among the barriers of HIS, the presence of inadequate planning that fails to cater to the needs of those adopting it hinders the optimization of these systems within the healthcare arena [ 71 ]. Cawthon, Mion [ 72 ] associated the lack of health literacy incorporation in deployed HIS to increased cost and poorer health outcomes. Hence, the insight from this study can be incorporated and associated with HIS initiatives to mitigate these issues. Thus, the findings of this study can be employed to strategize HIS deployment and plans as well as augment its potential to enhance healthcare. Furthermore, the competency of healthcare stakeholders such as patients can be enhanced with the findings of this study that accentuate the holistic representation of HIS in the dissimilation and assimilation of health data and information.

4. Conclusions

In the healthcare information and knowledge arena, assimilation and dissemination is a facet that influences healthcare delivery. The conception and evolution of HIS has positioned this system within the healthcare arena to arbitrate information interchange for its stakeholders. HIS deployment within healthcare has not only enabled information and knowledge management, but it has also enabled and driven many healthcare agendas and continues to maintain a solidified presence within the healthcare space. However, its deployment and enactment globally has been marred and plagued with several challenges that hinder its optimization and defeat its purpose. Phenomena such as the occurrences of pandemics such as COVID-19, which are uncertain, and the advancement of technology that cannot be controlled have caused disputed gradients regarding the positioning of HIS. These phenomena have not only influenced the adoption of HIS but have also limited its ability to be fully utilized. Although much research on HIS has been conducted, the presence of these phenomena and many other inherent challenges such as fragmentation and cost still maintain a constant, prominent presence, which has led to the need for this study.

Consequently, the starting point for this study was to provide insight and expertise regarding the discourse of HIS for healthcare applications. This paper presents current and pertinent insights regarding the deployment of the HIS that, when adopted, can positively aid its employment. This paper investigated the existing HIS literature to accomplish the objective set forth in the introduction. This study’s synthesis derived key insights relevant to the holistic view of HIS through a thorough systematic review of the various extant literature on HIS and healthcare. According to the study’s findings, HIS are critical and foundational in the drive of information and knowledge management for healthcare. The contribution of HIS to healthcare has been and continues to be groundbreaking since its conception and through its consequent evolution. Nevertheless, despite the presence of some limitations that are external and inherent, it is claimed to have transformed and changed healthcare from the start. Similarly, the evaluation of the current HIS is expected to impact its adoption and strengthen its implementation within the global healthcare space, which is greatly desired. These findings are of great importance to the healthcare stakeholders that directly and indirect interact with HIS. Additionally, scholars and healthcare researchers can benefit from this study by incorporating the findings in future works that plan HIS for healthcare.

Funding Statement

This research received no external funding.

Author Contributions

Conceptualization, A.E.; methodology, A.E.; software, A.E.; validation, A.E.; formal analysis, A.E.; investigation, A.E.; resources, A.E.; data curation, A.E.; writing—original draft preparation, A.E.; writing—review and editing, A.E.; visualization, A.E.; supervision, S.P.M. and I.E.A.; project administration, A.E., S.P.M. and I.E.A.; funding acquisition, A.E., S.P.M. and I.E.A. All authors have read and agreed to the published version of the manuscript.

Institutional Review Board Statement

Informed consent statement, data availability statement, conflicts of interest.

The authors declare there are no conflict of interest.

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ORIGINAL RESEARCH article

This article is part of the research topic.

Cybersecurity and Artificial Intelligence: Advances, Challenges, Opportunities, Threats

A comprehensive investigation of clustering algorithms for User and Entity Behavior Analytics Provisionally Accepted

• 1 BV TECH S.p.A., Italy

The final, formatted version of the article will be published soon.

Government agencies are now encouraging industries to enhance their security systems to detect and respond proactively to cybersecurity incidents. Consequently, equipping with a security operation center that combines the analytical capabilities of human experts with systems based on Machine Learning (ML) plays a critical role. In this setting, Security Information and Event Management (SIEM) platforms can effectively handle network-related events to trigger cybersecurity alerts. Furthermore, a SIEM may include a User and Entity Behavior Analytics (UEBA) engine that examines the behavior of both users and devices, or entities, within a corporate network. In recent literature, several contributions have employed ML algorithms for UEBA, especially those based on the unsupervised learning paradigm, because anomalous behaviors are usually not known in advance. However, to shorten the gap between research advances and practice, it is necessary to comprehensively analyze the effectiveness of these methodologies. This paper proposes a thorough investigation of traditional and emerging clustering algorithms for UEBA, considering multiple application contexts, i.e., different user-entity interaction scenarios. Our study involves three datasets sourced from the existing literature and fifteen clustering algorithms. Among the compared techniques, HDBSCAN and DenMune showed promising performance on the state-of-the-art CERT behavior-related dataset, producing groups with a density very close to the number of users.

Keywords: clustering, data analytics, machine learning, UEBA, unsupervised learning

Received: 24 Jan 2024; Accepted: 22 Apr 2024.

Copyright: © 2024 Artioli, Maci and Magrì. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY) . The use, distribution or reproduction in other forums is permitted, provided the original author(s) or licensor are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

* Correspondence: Dr. Antonio Maci, BV TECH S.p.A., Milan, Lombardy, Italy

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• Open access
• Published: 22 April 2024

Let the records speak: an exploration of rehabilitation services offered in primary healthcare, Johannesburg metropolitan district

• Lebogang Maseko   ORCID: orcid.org/0000-0002-6126-5104 1 ,
• Fasloen Adams   ORCID: orcid.org/0000-0001-6742-3727 2 &
• Hellen Myezwa   ORCID: orcid.org/0000-0003-4562-6413 3  

BMC Health Services Research volume  24 , Article number:  501 ( 2024 ) Cite this article

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Primary healthcare in South Africa aims to transform the national health system by emphasising community-based care and preventive strategies. However, rehabilitation services, particularly for individuals with disabilities and chronic non-communicable diseases, are often overlooked in primary healthcare. This study aimed to investigate the provision of primary healthcare rehabilitation services in the Johannesburg Metropolitan District by exploring client sociodemographics and variations in services provided by rehabilitation professionals.

A retrospective review of clinic rehabilitation records from 2011 to 2020 was conducted at nine provincially funded community health centres (CHCs) offering rehabilitation services. Stratified sampling facilitated record selection based on rehabilitation service type and year. A specifically designed data extraction tool captured demographics, disabilities, rehabilitation received, and referral sources. Descriptive analysis used means, standard deviations, and frequencies.

The findings show a diverse client population with a wide age range, with a significant proportion falling into the < 5 years and 30–49 years age groups. Neuromusculoskeletal and movement-related disabilities were most prevalent, affecting approximately two-thirds of clients. Referral sources were often undocumented, and inconsistent discharge information with no record of patient follow up, highlighted the need for improved documentation practices. Clinic visits were the primary service delivery mode, followed by limited home visits and outreach services. Occupational therapy and physiotherapy were the most used services. Speech and language therapy services were underused, and some CHCs lacked audiology services. There were variations in the number of individual and group sessions provided by the different rehabilitation services, and there were age- and disability-specific differences in service use.

This study offers insights into rehabilitation service provision in the Johannesburg Metropolitan District and enhances our understanding of rehabilitation services in primary healthcare settings. It underscores the importance of a multidisciplinary rehabilitation team to address diverse rehabilitation needs, improving documentation and discharge practices, expanding service delivery models, and reducing disparities in service use. The findings inform strategies for optimising service delivery, workforce, resource allocation, and intersectoral collaboration to ultimately enhance the quality and accessibility of integrated rehabilitation services.

Peer Review reports

International studies consistently show that increased investment in a broad range of rehabilitation services yields substantial health, social, and economic benefits [ 1 ]. Ensuring the provision of rehabilitation services to the entire population is considered a crucial aspect of achieving universal health coverage (UHC) [ 2 ]. The rehabilitation services contribute to community participation and wellbeing by improving capacity, functioning, and modifying the environment of people suffering from a wide range of health conditions [ 3 ]. Moreover, the provision of services using a primary healthcare (PHC) approach for optimal health, is achieved through meeting people’s health needs and preferences as close as possible to their everyday environment. This encompasses a range of healthcare activities, along the continuum of health care including promotion, prevention, treatment, rehabilitation, and palliative care. The PHC approach has been shown to reduce hospital admissions, healthcare costs, and promote community development [ 4 ].

There is international recognition of the importance of rehabilitation in health systems supporting first-contact and providing accessible, continued, comprehensive and coordinated patient-focused primary health care. However, the integration of rehabilitation services into health systems has progressed slowly in low- and middle-income countries [ 5 ]. A mere 25% of countries in the West Pacific region of the World Health Organisation (WHO) have sustainable PC rehabilitation services [ 6 ]. Fragmented healthcare and inadequate integration of rehabilitation into comprehensive health services are also reported in Iran and Nigeria in the African region [ 7 , 8 ]. Consequently, individuals with disabilities, the ageing population, and those burdened with chronic communicable and non-communicable diseases face inadequate access to rehabilitation services at PC level [ 5 ]. Recognising the need for solutions and practical guidance on integrating rehabilitation in PHC is highlighted by the WHO in their Rehabilitation 2030 initiative [ 9 ], and the Astana declaration on PHC and rehabilitation [ 10 ].

The Joint Learning Network for Universal Health Coverage emphasises the significance of raising awareness, capacity-building, and providing adequate data about services [ 11 ]. This action is supported, in the context of the WHO vision for primary care which also recognises the importance of functioning as a third health indicator [ 2 ]. Therefore, the data collected for our study incorporated the concept of function defined by the body functioning domains of the International Classification of Functioning, Disability and Health (ICF) [ 12 ].

In South Africa, PHC plays a pivotal role in the healthcare system as proposed by government policies, including the White Paper for the Transformation of the Health System [ 13 ] and the National Health Act of 2003 [ 14 ], which underscore the significance of the PHC approach as the cornerstone of the country’s healthcare transformation. Although the commitment to the PHC approach is reinforced by the National Health Insurance (NHI) Bill of July 2019, adopted in November 2023 [ 15 ], the current recognition of PC in South Africa is predominantly rooted in a medical model philosophy. The medical model emphasises nurse-driven services with support from doctors, pharmacists, and dentists, while rehabilitation services and person-centred care are not adequately encompassed or prioritised [ 16 , 17 ]. Efforts to address deficiencies in PHC facilities in South Africa are outlined in the ‘Ideal Clinic’ programme. However, the programme does not explicitly address the staffing or resource allocation for rehabilitation services, apart from a general acknowledgment of the significance of providing access to rehabilitation services for patients [ 18 , 19 ]..

The provision of multidisciplinary rehabilitation depends on the availability of skilled personnel, and these professions include occupational therapy, physiotherapy, physical and rehabilitation medicine, prosthetics and orthotics, psychology, social work and speech and language therapy [ 20 ]. In South Africa, PC rehabilitation services are only offered by rehabilitation professionals such as occupational therapists, physiotherapist, speech and language therapist and audiologists as professionally designated by the Health Professionals Council of South Africa (HPCSA). The rehabilitation services are far from optimal in that they are mainly hospital based with little consideration of broad multi-, inter-and trans- disciplinary teams [ 21 ] that can contribute to health care in conjunction with those registered as allied health services [ 22 ]. Other health professionals in shortage at the primary care level include nurses, psychologists, prosthetists and orthotists, social workers, and doctors. Therefore, the implementation of intersectoral rehabilitation services in PHC facilities remains limited in South Africa with less than a quarter of facilities currently providing such services [ 23 , 24 ].

In contrast, PHC rehabilitation research in high-income countries indicates that occupational therapy, physiotherapy and speech and language therapy services are well established. Studies show that these services primarily focus on chronic disease, self-management and improving physical functioning, which is often supplemented with online support for clients [ 25 ]. In Sweden, PC physiotherapists predominantly provide physical activity programmes to middle-aged and older adults with conditions such as musculoskeletal disorders, obesity, hypertension, and diabetes [ 26 ]. Occupational therapists practicing in PC settings in Norway report that over 80% of their clients are adults and 44% are old age pensioners. The study reported that the conditions treated by occupational therapists included neurological diseases, particularly stroke, as well as musculoskeletal and mental illnesses, which accounted for 13–20% of referrals. Notably, 96% of clients presented with movement impairments, and 94% of them experience challenges in activities and participation related to education, work, and leisure [ 27 ]. In the UK, the duration of physiotherapy intervention and referral patterns in PC indicate that services may be offered for less than a month. However, most clients receive supportive treatment over a two-year period, with many referrals originating from triage at the clinic reception or through self-referral [ 28 ]. A Norwegian study indicates physiotherapy services for smaller numbers of children in PHC clinics where most clients present with motor development impairments and lower limb orthopaedic diagnoses [ 27 ]. Additionally, clients with prematurity and heart or lung disease also receive PC rehabilitation services [ 29 ].

In low to middle income countries such as Brazil, referrals for speech and language therapy PC services are mainly for children. They treat learning disorders, poor language development, Attention Deficit Hyperactivity Disorder, stuttering, mutism, and hearing issues [ 30 ]. A study from Indonesia noted a higher percentage of patients with neurological conditions receiving treatment [ 31 ]. A study conducted in South Africa highlights that clients who receive physiotherapy services at PHC clinics most commonly present with back pain, stroke, and upper and lower limb injuries [ 32 ]. However, despite this information, there is a critical lack of supporting evidence in South Africa regarding the use of rehabilitation services at a PC level and the extent to which they are integrated into PHC [ 24 ].

In South Africa sociodemographic data concerning the individuals who use PC rehabilitation services, the specific rehabilitation professionals who provide these services, and the services provided are scarce. The WHO Rehabilitation Programme [ 33 ] acknowledges the importance of gathering information on existing services and the sociodemographic information of the people accessing these services to inform the development of comprehensive rehabilitation interventions at both national and sub-national levels to effectively meet the individual needs of diverse populations and boost rehabilitation planning efforts [ 24 , 33 ].

Therefore, the objective of the current study was to investigate the extent and nature of rehabilitation services provided in the Johannesburg Metropolitan District. The study specifically focussed on examining the structure, accessibility, delivery, and use of these services to address this knowledge gap.

A retrospective review of clinic rehabilitation records was conducted in an urban setting to investigate the rehabilitation services provided between 2011 and 2020. The research setting was the Johannesburg Metropolitan District, which encompasses 125 PC clinics and CHCs across seven regions, serving a population of 5.5 million [ 34 ]. Of the 5.5 million, 2.35 million have a monthly income that falls below the upper limit poverty line of ZAR 1227 (estimated $61) per person [ 35 ]. Only nine of the 125 PC clinics and CHCs in the Johannesburg Metropolitan District are managed by the provincial rather than municipal health services. These nine facilities provide rehabilitation services and were selected for our study. The rehabilitation services encompass individual and group outpatient therapy, community reintegration as a focus, outreach and home visits, as well as education and awareness campaigns facilitated by multidisciplinary teams [ 36 ].

Stratified sampling was used to select rehabilitation service paper-based records according to the only rehabilitation service providers employed at the clinics: occupational therapists, physiotherapists, speech and language therapists and audiologists. Within each discipline, further stratification was performed based on the year of the records available. The sample size was determined using Cochran’s formula [ 37 ], setting a 95% confidence level and a 5% margin of error. There were 238 740 records spanning a 9-year period, and therefore, a review of at least 540 records was deemed necessary. Although the period 2011–2020 was initially identified for the record review, not all facilities had rehabilitation service user records for those years because of varying record storage practices. Therefore, the sampling included client rehabilitation paper-based records for the years available at each facility ranging from 2011 to 2020, inclusively. A random sample was extracted from the records stratified for each rehabilitation service and year from the available records at each facility to fulfil the required sample size.

Data extraction was done using a data extraction tool designed and piloted by the first author in Microsoft Excel. The tool facilitated the collection of various data points, including sociodemographic information such as age and disability related to impairment, which was classified using the classification of the ICF based on body functioning domains [ 12 ]. Additionally, data regarding the referral source and nature and duration of received rehabilitation and of services provided by rehabilitation discipline, were extracted. Permission to conduct the study was obtained from the Gauteng Department of Health and the Human Research Ethics Committee (Medical) of the Faculty of Health Sciences at the University of the Witwatersrand (M190466). Descriptive analysis was used to analyse the collected data using means, standard deviations, and frequencies to describe the profile of the service users and the characteristics of the rehabilitation services they received.

A total of 630 paper-based records were reviewed. The number of records extracted varied across the clinics due to the differences in the availability of records; Lenasia Clinic had the highest availability (13.5%) of records, and the Hillbrow CHC had the lowest (7.0%) (Table  1 ).

Sociodemographic profile of clients

The analysis of client sociodemographics revealed that the mean age at the time of assessment was 32 years (SD = 35.2) and ranged from 0 to 102 years. Most clients fell into the age groups < 5 years (22.9%) and 30–49 years (24.1%). Older participants constituted only 11% of the sample (Table  2 ).

Disability related to impairments (ICF body function)

Regarding affected functioning categorized by the WHO ICF domains of body function, neuromusculoskeletal and movement-related functions (b7) were the most common and occurred in approximately two-thirds of clients (66.2%), followed by mental function impairments (b1) (15.6%).

However, only 4.4% of clients were recorded as having multiple impairments although most clients had multiple functioning domains affected (Table  3 ).

Rehabilitation services received

Source of referral.

Clients were referred to the PC facility from various sources. However, the referral source for most clients (61.4%) was not recorded. Among the recorded source of referrals, most were down referrals from secondary and tertiary hospitals. Referrals from other sources include NGOs, private doctors, and other services at the PC level (Table  4 ).

Reasons for discontinued therapy

Discharge information was inadequately reported in the records, but most clients were lost to follow-up (64.1%), and 15.1% were referred elsewhere. (Table  5 ).

Number and types of visits for all rehabilitation services

Clinic visits, where clients attend outpatient rehabilitation services, accounted for the largest number of visits, ranging from one to six or more, with most clients only seen once (48.7%). Six home visits to clients, and eight outreach visits were recorded where clients were at school or a community group. (Table  6 ).

Rehabilitation services received and frequency of sessions

Occupational therapy and physiotherapy were the most frequently provided rehabilitation services across the nine facilities at more than 40%, while audiology had the lowest use (7.1%). It is important to note that many clients attended multiple therapies (Table  7 ).

Individual and group sessions received

The records indicated that most clients received at least one individual or group session from specific rehabilitation services (ranging from 87 to 100%). The mean number of individual sessions varied across services, with occupational therapy and speech and language therapy averaging 2.5 sessions and audiology averaging 1.7 sessions. The number of individual sessions ranged from 1 to 13 for occupational therapy, 1 to 12 for physiotherapy and speech and language therapy, and 1 to 6 for audiology (Table  8 ).

Rehabilitation provided per clinic

No significant difference was found between occupational therapy and physiotherapy services across the nine clinics. However, speech and language therapy was provided to less than 20% of total clients at only four of the nine CHCs. Four CHCs did not offer audiology services (Table  9 ).

Rehabilitation received per discipline by disability related to body function

The analysis of client demographics and disabilities in relation to rehabilitation services revealed that clients with mental function disabilities were predominantly seen by occupational therapists. Physiotherapists primarily worked with clients with movement-related dysfunction while speech and language therapists treated those with voice and speech impairments associated with neuromusculoskeletal disabilities.

As expected, audiologists saw a higher proportion of clients with sensory function and pain-related disabilities (Table  10 ).

Rehabilitation received per discipline by age at assessment

A significant difference was observed in the percentage of clients seen in different age groups across all four rehabilitation services. A significantly greater percentage of younger age groups, including children and adolescents, received occupational therapy and speech and language therapy, while young, middle, and older adults received services from physiotherapy and audiology services (Table  11 ).

The review of client records across the nine PC facilities providing rehabilitation services in the Johannesburg Metropolitan District revealed the sociodemographic profile of clients accessing rehabilitation services, and indicated a wide age range, with a mean age of 32 years. The high proportion of clients in the < 5 years and 30–49 years age groups suggests that rehabilitation services are used by both children and adults within the district, while the older adults constituted a smaller portion of the sample. The wide age range of rehabilitation service users is encouraging, thus rehabilitation PC services should be available across the life course of service users, along the continuum of care, and reflective of all types of care required in the healthcare system in trying to achieve UHC [ 4 ]. The age distribution is different to trends in Europe and the UK where most clients are older adults [ 27 , 28 , 29 ]. The age distribution aligns with the diverse population demographics of the Johannesburg Metropolitan District [ 38 ] where, services for children under the age of 5 years and the older adults are free of charge in South African clinics, which may contribute to the observed age distribution.

Both the Department of Education and the Department of Health share responsibilities for children over the age of six, with the Department of Education specifically accountable for learning and developmental interventions [ 39 ]. Furthermore, the high proportion of children under 5 years is aligned with population-based data that shows that the proportion of children with disabilities in low- and middle-income countries is high [ 40 , 41 ]. It would further explain the high proportion of paediatric neuromusculoskeletal, and movement-related functions (b7) seen in the CHCs in this study. The records reviewed in our study indicate that over 33% of clients receiving services were children and adolescents, compared to 20% reported in a high income country such as Norway [ 27 ]. The findings are congruent with the South African statistics indicating nearly 30% of the population is under the age of 15 years [ 42 ].

Thus, services must be configured to optimise outcomes for clients across different life stages according to the specific national context to ensure that age-specific rehabilitation needs are adequately addressed in the planning and delivery of services.

Among the clients accessing rehabilitation services, neuromusculoskeletal and movement-related functions were the most prevalent disabilities, followed by mental function (b1) disabilities. These findings are consistent with global trends, emphasising the high prevalence of musculoskeletal and neurological conditions and the importance of addressing mental health within rehabilitation services [ 26 , 43 , 44 ]. This aligns with international studies where physiotherapists and occupational therapists treating adults confirmed they most frequently provide interventions for clients with these conditions using a PHC approach [ 45 ]. Mental health, which is rarely mentioned in relation to PC rehabilitation, can be considered in two categories, namely individuals with mental health conditions as a diagnosis, and those with physical impairments who experience associated mental health concerns [ 2 ]. The presence of multiple impairments in a subset of clients further highlights the complexities present in rehabilitation service users and underscores the need for comprehensive and interdisciplinary approaches to rehabilitation [ 46 , 47 , 48 ] that excel in a wide range of generalist competencies rather than specialised or narrow competencies.

Our study indicated poor recording of the referral sources for most clients which represents a substantial data gap. It hinders the understanding and formalising of the referral pathways through which clients access rehabilitation services and impedes efforts to improve coordination and continuity of care required to provide integrated rehabilitation services in PHC [ 49 ]. Enhancing data collection practices to capture this information uniformly and accurately would provide valuable insights into care coordination and identify potential areas for intervention. The prevalence of hospital down referrals suggests that collaboration between PC facilities and higher-level healthcare institutions is essential in facilitating access to rehabilitation services [ 49 ]. It could be, however, that overstretched hospital based services may account for an influx of patients referred to PC rehabilitation services who still require acute in-hospital care, but are down-referred due to high patient numbers in hospitals and increased demand for in-patient beds [ 50 ].

Discharge information was inadequately reported in the records, with most clients being lost to follow-up. While hospitals are identified as the primary source of down referrals, the absence of documented discharge information at the PC level raises concerns regarding the extent of collaborative referrals and feedback on referrals, particularly for clients with complex diseases. This finding highlights a gap in record-keeping practices and long-term follow-up of clients. It emphasises the need for strategies to improve accessible record keeping, post-rehabilitation support, and long-term management in PC. Understanding the reasons for discharge and lack of treatment continuity is essential. Ways to enhance patient engagement and adherence to rehabilitation programmes are essential for achieving optimal outcomes and should be explored[ 51 ]. Addressing accessible and comprehensive record keeping and long-term follow-up is important for evaluating the effectiveness of interventions and providing appropriate support to clients throughout their rehabilitation journey.

Clinic visits were found to be the most common mode of service delivery, with limited home visits and outreach visits to NGOs. This suggests that the current focus of rehabilitation services primarily revolves around clinic-based care, with limited attention given to delivering services in clients’ homes, care institutions or reaching out to underserved communities [ 52 ]. The literature highlights alternative models of care, such as community-based rehabilitation and the use of community health workers in areas with limited access to PC rehabilitation services [ 53 ]. Expanding service delivery beyond PHC clinic settings through outreach services and home-based rehabilitation programmes could enhance accessibility for vulnerable populations and ensure a more comprehensive approach to rehabilitation. Although tele-rehabilitation may be an option this is impacted by high data costs and lack of constant electricity supply in South Africa [ 54 ].

Increasing investment in rehabilitation is important for expanding the workforce and capacity in South Africa. The investment includes funding human resources for primary care rehabilitation services. Such services should be integrated into multidisciplinary ward-based outreach teams located in primary care facilities. These teams would provide a range of services—outreach, preventive, promotive, curative, rehabilitative, and palliative—to individuals, groups, and communities. Additionally, fostering partnerships between government and NGOs is essential to enhance these efforts. [ 55 , 56 ]. Moreover, alternative service delivery models have the potential to improve the reach and effectiveness of rehabilitation services and enhance their integration into PHC. Community-based rehabilitation with an emphasis on community participation and empowerment has been shown to improve health outcomes [ 53 ]. Trained community health workers can serve as liaisons between the healthcare system and the community by building trust and establishing open communication channels between rehabilitation providers and users [ 57 ].

The frequency of clinic visits and the number of group sessions also varied slightly between the different rehabilitation services, with a small percentage of clients receiving six to 13 individual sessions or more than five group sessions. This is a concern considering the chronic nature of some conditions receiving intervention at clinics. Research in the UK indicates that most PC physiotherapy clients are seen for at least two years for initial rehabilitative and later supportive care [ 28 ]. The poor records, loss to follow-up with limited resources in the clinics, and clients experiencing barriers in terms of transport and finances to access clinics may play a role in the shorter intervention periods and fewer sessions of rehabilitation [ 58 ].

The Gauteng Health Strategic Plan 2019/2021–2024/25 highlights the insufficient number of audiologists available to assess patients with chronic illnesses and provide universal hearing diagnostic services for babies as a gap in planning of adequate rehabilitation services, technologies and required hearing devices [ 39 ]. It is concerning, yet unsurprising, that audiologists primarily provide services to older adults. A study by Swanepoel et al., which used mobile phone diagnosis for children in the community in South Africa, found a low referral rate of 24.9% for further assessment in preschool children [ 59 ]. Additionally, a low follow-up return rate of 39.4% was discovered, primarily due to extended waiting periods before follow-up appointments at PHC clinics. The effective implementation of ear and hearing services at the PHC level requires careful planning, clear programme goals, and defined care pathways [ 60 ]. It is important to explore strategies, such as including audiology services into the School Health Programme of the reengineered PHC approach, to enhance the provision of audiology services and increase awareness of their importance. Given the shortage of available services at a limited number of clinics and a national shortage of rehabilitation personnel, especially at PC level a task-sharing approach for a limited set of basic interventions should also be considered to improve access [ 61 ].

The number of individual sessions varied across the rehabilitation services, with occupational therapy and speech and language therapy having higher average session numbers compared to physiotherapy and audiology. These variations may reflect differences in treatment protocols, severity of conditions, complexity of the functional outcome or resource allocation. Further research is needed to determine the optimal frequency and duration of rehabilitation sessions to maximise outcomes and patient satisfaction. This research would also inform the packages of care to be funded under the NHI in South Africa.

The findings highlight significant differences in the distribution of rehabilitation services across impairments and age groups [ 62 ]. Our study provides an indication of differences in PC rehabilitation services in an urban South African context, considering five rehabilitation services rather than focusing on a single service. This information is valuable for planning rehabilitation services based on disability needs and age-specific patterns. Tailoring rehabilitation services to the unique requirements of people with different disabilities and age groups has the potential to enhance their effectiveness and relevance within UHC provision [ 2 ].

An important limitation impacting PC in South Africa is the lack of planning and monitoring, which is essential to inform further development of rehabilitation. The inability to monitor rehabilitation services is due in part to the absence of national agreed minimum data sets for rehabilitation services as well as rehabilitation records and health records in South Africa not being in electronic format. Indeed, the WHO emphasises the functionality of shared electronic health records linked to other health facilities and services to support two-way referrals, multidisciplinary teamwork, and continuity of treatment along clinical pathways [ 2 ]. In the current study, the record review was compounded by the variations in record availability and storage among the CHCs and rehabilitation services. Some of the CHCs store their records at a central storage facility while others keep them on-site. The cause of these differences is unknown, but it could be due to a lack of clear record-management policy and storage guidelines, as well as insufficient implementation or resources by rehabilitation professionals to implement existing guidelines. According to the HPCSA, records should be specific, include important information, and should be stored for a minimum of six years from the date of the patient’s last treatment by a healthcare practitioner [ 63 ], but the life cycle [ 64 ]for other medical records varies for hospitals, health funders and different categories of patients. These discrepancies in record-keeping practicesunderscore the need for a consistent and standardised single record-keeping system across PHC facilities [ 56 ]. Additionally, the fact that each rehabilitation service is required to maintain separate records, even during combined sessions for financial and legal/litigation purposes, suggests a lack of integration and siloed service delivery, which affects integration and multidisciplinary teamwork.

Given that the CHCs included in the study serve densely populated and overcrowded townships, where 95% of the population resides, it is crucial to implement integrated and coordinated approaches to rehabilitation service record keeping to ensure continuity of care and integrated service delivery [ 38 ].

Strengthening the Routine Health Information System for rehabilitation in the country is needed to allow for regular, easy accessibility and analysis of -real time data compared with population needs, -user profile data, -referral practices and -completion of rehabilitation episodes. This monitoring is essential to plan and evaluate rehabilitation to appreciate the impact of improvement and outcomes [ 65 ].

While our study provides valuable insights into the provision of rehabilitation services in the Johannesburg Metropolitan District, it is important to acknowledge some limitations. The retrospective nature of the study and its reliance on the accessibility and accuracy of CHC records may have introduced bias. Moreover, the study’s focus on provided services overlooks those that are not provided and the reasons behind it. Additionally, the study focussed on the nine CHCs offering rehabilitation services, and the findings may not be generalisable to other regions or healthcare settings. Future research should address these limitations and further explore the identified gaps in rehabilitation services to inform policy and practice in a broader context.

The results from our study outline data available on the rehabilitation services in PHC clinics in the Johannesburg Metropolitan District. The analysis of clinical rehabilitation records from nine provincially funded CHCs between 2011 and 2020 revealed valuable insights into the demographics of clients, types of disabilities, referral sources, service use, and variations in rehabilitation services across the nine CHCs. The findings underscore the diverse rehabilitation needs across different age groups and disabilities and the differences in services offered by different rehabilitation disciplines. Rehabilitation services should be tailored to meet the needs of individuals with a diverse age range, from children to older adults. This includes ensuring services are reflective of all types of care required at different life stages. Missing data revealed the need to improve documentation practices, enhance coordination between healthcare facilities, and expand service delivery models. Future research should explore the alignment of the South African PHC approach with the WHO Package of interventions for rehabilitation [ 66 ], the effectiveness of rehabilitation interventions, the impact on patient outcomes, and the factors influencing service provision and access, including the lacking healthcare professions. Strategies to improve the provision and awareness of audiology services should be implemented, especially in the context of the School Health Programme and other community-based initiatives. By addressing these issues, we can strive towards delivering inclusive, person-centred, and integrated rehabilitation services that maximise independence, functioning, and quality of life for individuals in need. Further research using qualitative and mixed method studies are recommended as well as research to develop an agreed minimum rehabilitation dataset for rehabilitation services at the PC level.

Data availability

The data that support the findings of this study are available from the corresponding author, LM, upon reasonable request.

Abbreviations

• Community health centres

non-governmental organisations

national health insurance

primary care

primary healthcare

Universal Health Coverage

United Kingdom

World Health Organization

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Acknowledgements

The authors would like to acknowledge Prof de Witt and Dr Franzsen for their input in the review of the manuscript.

This research was supported by the Consortium for Advanced Research Training in Africa (CARTA), which is jointly led by the African Population and Health Research Center and the University of the Witwatersrand. It is funded by the Carnegie Corporation of New York (Grant No. G-19-57145), Sida (Grant No: 54100113), Uppsala Monitoring Center, Norwegian Agency for Development Cooperation (Norad), the Wellcome Trust (reference no. 107768/Z/15/Z) and the UK Foreign, Commonwealth & Development Office, with support from the Developing Excellence in Leadership, Training and Science in Africa (DELTAS Africa) programme. The statements and views expressed are solely the responsibility of the Fellow. For the purpose of open access, the author has applied a CC BY public copyright licence to any author accepted manuscript version arising from this submission.

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LM conceptualised and designed the study, collected data, carried out the initial and secondary analysis, and drafted, reviewed, and revised the manuscript. HM and FA supervised the study, including conceptualisation and critically reviewing the manuscript for important intellectual content. All authors approved the final manuscript submitted and agreed to be accountable for all aspects of the work.

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Maseko, L., Adams, F. & Myezwa, H. Let the records speak: an exploration of rehabilitation services offered in primary healthcare, Johannesburg metropolitan district. BMC Health Serv Res 24 , 501 (2024). https://doi.org/10.1186/s12913-024-10965-6

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Two key brain systems are central to psychosis, Stanford Medicine-led study finds

When the brain has trouble filtering incoming information and predicting what’s likely to happen, psychosis can result, Stanford Medicine-led research shows.

April 11, 2024 - By Erin Digitale

People with psychosis have trouble filtering relevant information (mesh funnel) and predicting rewarding events (broken crystal ball), creating a complex inner world. Emily Moskal

Inside the brains of people with psychosis, two key systems are malfunctioning: a “filter” that directs attention toward important external events and internal thoughts, and a “predictor” composed of pathways that anticipate rewards.

Dysfunction of these systems makes it difficult to know what’s real, manifesting as hallucinations and delusions. 

The findings come from a Stanford Medicine-led study , published April 11 in  Molecular Psychiatry , that used brain scan data from children, teens and young adults with psychosis. The results confirm an existing theory of how breaks with reality occur.

“This work provides a good model for understanding the development and progression of schizophrenia, which is a challenging problem,” said lead author  Kaustubh Supekar , PhD, clinical associate professor of psychiatry and behavioral sciences.

The findings, observed in individuals with a rare genetic disease called 22q11.2 deletion syndrome who experience psychosis as well as in those with psychosis of unknown origin, advance scientists’ understanding of the underlying brain mechanisms and theoretical frameworks related to psychosis.

During psychosis, patients experience hallucinations, such as hearing voices, and hold delusional beliefs, such as thinking that people who are not real exist. Psychosis can occur on its own and isa hallmark of certain serious mental illnesses, including bipolar disorder and schizophrenia. Schizophrenia is also characterized by social withdrawal, disorganized thinking and speech, and a reduction in energy and motivation.

It is challenging to study how schizophrenia begins in the brain. The condition usually emerges in teens or young adults, most of whom soon begin taking antipsychotic medications to ease their symptoms. When researchers analyze brain scans from people with established schizophrenia, they cannot distinguish the effects of the disease from the effects of the medications. They also do not know how schizophrenia changes the brain as the disease progresses. 

To get an early view of the disease process, the Stanford Medicine team studied young people aged 6 to 39 with 22q11.2 deletion syndrome, a genetic condition with a 30% risk for psychosis, schizophrenia or both. 

Kaustubh Supekar

Brain function in 22q11.2 patients who have psychosis is similar to that in people with psychosis of unknown origin, they found. And these brain patterns matched what the researchers had previously theorized was generating psychosis symptoms.

“The brain patterns we identified support our theoretical models of how cognitive control systems malfunction in psychosis,” said senior study author  Vinod Menon , PhD, the Rachael L. and Walter F. Nichols, MD, Professor; a professor of psychiatry and behavioral sciences; and director of the  Stanford Cognitive and Systems Neuroscience Laboratory .

Thoughts that are not linked to reality can capture the brain’s cognitive control networks, he said. “This process derails the normal functioning of cognitive control, allowing intrusive thoughts to dominate, culminating in symptoms we recognize as psychosis.”

Cerebral sorting  

Normally, the brain’s cognitive filtering system — aka the salience network — works behind the scenes to selectively direct our attention to important internal thoughts and external events. With its help, we can dismiss irrational thoughts and unimportant events and focus on what’s real and meaningful to us, such as paying attention to traffic so we avoid a collision.

The ventral striatum, a small brain region, and associated brain pathways driven by dopamine, play an important role in predicting what will be rewarding or important. 

For the study, the researchers assembled as much functional MRI brain-scan data as possible from young people with 22q11.2 deletion syndrome, totaling 101 individuals scanned at three different universities. (The study also included brain scans from several comparison groups without 22q11.2 deletion syndrome: 120 people with early idiopathic psychosis, 101 people with autism, 123 with attention deficit/hyperactivity disorder and 411 healthy controls.) 

The genetic condition, characterized by deletion of part of the 22nd chromosome, affects 1 in every 2,000 to 4,000 people. In addition to the 30% risk of schizophrenia or psychosis, people with the syndrome can also have autism or attention deficit hyperactivity disorder, which is why these conditions were included in the comparison groups.

The researchers used a type of machine learning algorithm called a spatiotemporal deep neural network to characterize patterns of brain function in all patients with 22q11.2 deletion syndrome compared with healthy subjects. With a cohort of patients whose brains were scanned at the University of California, Los Angeles, they developed an algorithmic model that distinguished brain scans from people with 22q11.2 deletion syndrome versus those without it. The model predicted the syndrome with greater than 94% accuracy. They validated the model in additional groups of people with or without the genetic syndrome who had received brain scans at UC Davis and Pontificia Universidad Católica de Chile, showing that in these independent groups, the model sorted brain scans with 84% to 90% accuracy.

The researchers then used the model to investigate which brain features play the biggest role in psychosis. Prior studies of psychosis had not given consistent results, likely because their sample sizes were too small. 

Vinod Menon

Comparing brain scans from 22q11.2 deletion syndrome patients who had and did not have psychosis, the researchers showed that the brain areas contributing most to psychosis are the anterior insula (a key part of the salience network or “filter”) and the ventral striatum (the “reward predictor”); this was true for different cohorts of patients.

In comparing the brain features of people with 22q11.2 deletion syndrome and psychosis against people with psychosis of unknown origin, the model found significant overlap, indicating that these brain features are characteristic of psychosis in general.

A second mathematical model, trained to distinguish all subjects with 22q11.2 deletion syndrome and psychosis from those who have the genetic syndrome but without psychosis, selected brain scans from people with idiopathic psychosis with 77.5% accuracy, again supporting the idea that the brain’s filtering and predicting centers are key to psychosis.

Furthermore, this model was specific to psychosis: It could not classify people with idiopathic autism or ADHD.

“It was quite exciting to trace our steps back to our initial question — ‘What are the dysfunctional brain systems in schizophrenia?’ — and to discover similar patterns in this context,” Menon said. “At the neural level, the characteristics differentiating individuals with psychosis in 22q11.2 deletion syndrome are mirroring the pathways we’ve pinpointed in schizophrenia. This parallel reinforces our understanding of psychosis as a condition with identifiable and consistent brain signatures.” However, these brain signatures were not seen in people with the genetic syndrome but no psychosis, holding clues to future directions for research, he added.

Applications for treatment or prevention

In addition to supporting the scientists’ theory about how psychosis occurs, the findings have implications for understanding the condition — and possibly preventing it.

“One of my goals is to prevent or delay development of schizophrenia,” Supekar said. The fact that the new findings are consistent with the team’s prior research on which brain centers contribute most to schizophrenia in adults suggests there may be a way to prevent it, he said. “In schizophrenia, by the time of diagnosis, a lot of damage has already occurred in the brain, and it can be very difficult to change the course of the disease.”

“What we saw is that, early on, functional interactions among brain regions within the same brain systems are abnormal,” he added. “The abnormalities do not start when you are in your 20s; they are evident even when you are 7 or 8.”

Our discoveries underscore the importance of approaching people with psychosis with compassion.

The researchers plan to use existing treatments, such as transcranial magnetic stimulation or focused ultrasound, targeted at these brain centers in young people at risk of psychosis, such as those with 22q11.2 deletion syndrome or with two parents who have schizophrenia, to see if they prevent or delay the onset of the condition or lessen symptoms once they appear. 

The results also suggest that using functional MRI to monitor brain activity at the key centers could help scientists investigate how existing antipsychotic medications are working. 

Although it’s still puzzling why someone becomes untethered from reality — given how risky it seems for one’s well-being — the “how” is now understandable, Supekar said. “From a mechanistic point of view, it makes sense,” he said.

“Our discoveries underscore the importance of approaching people with psychosis with compassion,” Menon said, adding that his team hopes their work not only advances scientific understanding but also inspires a cultural shift toward empathy and support for those experiencing psychosis. 

“I recently had the privilege of engaging with individuals from our department’s early psychosis treatment group,” he said. “Their message was a clear and powerful: ‘We share more similarities than differences. Like anyone, we experience our own highs and lows.’ Their words were a heartfelt appeal for greater empathy and understanding toward those living with this condition. It was a call to view psychosis through a lens of empathy and solidarity.”

Researchers contributed to the study from UCLA, Clinica Alemana Universidad del Desarrollo, Pontificia Universidad Católica de Chile, the University of Oxford and UC Davis.

The study was funded by the Stanford Maternal and Child Health Research Institute’s Uytengsu-Hamilton 22q11 Neuropsychiatry Research Program, FONDEYCT (the National Fund for Scientific and Technological Development of the government of Chile), ANID-Chile (the Chilean National Agency for Research and Development) and the U.S. National Institutes of Health (grants AG072114, MH121069, MH085953 and MH101779).

About Stanford Medicine

Stanford Medicine is an integrated academic health system comprising the Stanford School of Medicine and adult and pediatric health care delivery systems. Together, they harness the full potential of biomedicine through collaborative research, education and clinical care for patients. For more information, please visit med.stanford.edu .

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Key facts about U.S. immigration policies and Biden’s proposed changes

Since President Joe Biden took office in January 2021, his administration has acted on a number of fronts to reverse Trump-era restrictions on immigration to the United States. The steps include plans to boost refugee admissions , preserving deportation relief for unauthorized immigrants who came to the U.S. as children and not enforcing the “ public charge ” rule that denies green cards to immigrants who might use public benefits like Medicaid.

Biden has also lifted restrictions established early in the coronavirus pandemic that drastically reduced the number of visas issued to immigrants. The number of people who received a green card declined from about 240,000 in the second quarter of the 2020 fiscal year (January to March) to about 79,000 in the third quarter (April to June). By comparison, in the third quarter of fiscal 2019, nearly 266,000 people received a green card.

Biden’s biggest immigration proposal to date would allow more new immigrants into the U.S. while giving millions of unauthorized immigrants who are already in the country a pathway to legal status. The expansive legislation would create an eight-year path to citizenship for the nation’s estimated 10.5 million unauthorized immigrants , update the existing family-based immigration system, revise employment-based visa rules and increase the number of diversity visas . By contrast, President Donald Trump’s administration sought to restrict legal immigration in a variety of ways, including through legislation that would have overhauled the nation’s legal immigration system by sharply reducing family-based immigration.

The Biden administration has proposed legislation that would create new ways for immigrants to legally enter the United States. The bill would also create a path to citizenship for unauthorized immigrants living in the country.

To better understand the existing U.S. immigration system, we analyzed the most recent data available on federal immigration programs. This includes admission categories for green card recipients and the types of temporary employment visas available to immigrant workers. We also examined temporary permissions granted to some immigrants to live and work in the country through the Deferred Action for Childhood Arrivals and Temporary Protected Status programs.

This analysis relies on data from various sources within the U.S. government, including the Department of Homeland Security, Citizenship and Immigration Services, the Department of State, Federal Register announcements and public statements from the White House.

The Senate is considering several immigration provisions in a spending bill, the Build Back Better Act , that the House passed in November 2021. While passage of the bill is uncertain – as is the inclusion of immigration reforms in the bill’s final version – the legislation would make about 7 million unauthorized immigrants eligible to apply for protection from deportation, work permits and driver’s licenses.

Amid a record number of migrant encounters at the U.S.-Mexico border, Biden reinstated in December 2021 a Trump-era policy that requires those who arrive at the U.S.-Mexico border and seek asylum to wait in Mexico while their claims are processed. Biden had earlier ended the Migration Protection Protocols , or “Remain in Mexico” policy, and then restarted it after the U.S. Supreme Court upheld a lawsuit by Texas and Missouri that challenged the program’s closure. Asylum seekers do not receive a legal status that allows them to live and work in the U.S. until the claim is approved.

Overall, more than 35 million lawful immigrants live in the U.S.; most are American citizens. Many live and work in the country after being granted lawful permanent residence, while others receive temporary visas available to students and workers. In addition, roughly 1 million unauthorized immigrants have temporary permission to live and work in the U.S. through the Deferred Action for Childhood Arrivals and Temporary Protected Status programs.

Here are key details about existing U.S. immigration programs, as well as Biden’s proposed changes to them:

Family-based immigration

In fiscal 2019, nearly 710,000 people received lawful permanent residence in the U.S. through family sponsorship. The program allows someone to receive a green card if they already have a spouse, child, sibling or parent living in the country with U.S. citizenship or, in some cases, a green card. Immigrants from countries with large numbers of applicants often wait for years to receive a green card because a single country can account for no more than 7% of all green cards issued annually.

Biden’s proposal would expand access to family-based green cards in a variety of ways, such as by increasing per-country caps and clearing application backlogs. Today, family-based immigration – referred to by some as “ chain migration ” – is the most common way people gain green cards, in recent years accounting for about two-thirds of the more than 1 million people who receive green cards annually.

Refugee admissions

The U.S. admitted only 11,411 refugees in fiscal year 2021, the lowest number since Congress passed the 1980 Refugee Act for those fleeing persecution in their home countries. The low number of admissions came even after the Biden administration raised the maximum number of refugees the nation could admit to 62,500 in fiscal 2021 . Biden has increased the refugee cap to 125,000 for fiscal 2022, which started on Oct. 1, 2021.

The low number of admissions in recent years is due in part to the ongoing pandemic. The U.S. admitted only about 12,000 refugees in fiscal 2020 after the country suspended admissions during the coronavirus outbreak . This was down from nearly 54,000 in fiscal 2017 and far below the nearly 85,000 refugees admitted in fiscal 2016, the last full fiscal year of the Obama administration.

The recent decline in refugee admissions also reflects policy decisions made by the Trump administration before the pandemic. Trump capped refugee admissions in fiscal 2020 at 18,000 , the lowest total since Congress created the modern refugee program in 1980.

Employment-based green cards

In fiscal 2019, the U.S. government awarded more than 139,000 employment-based green cards to foreign workers and their families. The Biden administration’s proposed legislation could boost the number of employment-based green cards, which are capped at about 140,000 per year . The proposal would allow the use of unused visa slots from previous years and allow spouses and children of employment-based visa holders to receive green cards without counting them against the annual cap. These measures could help clear the large backlog of applicants. The proposed legislation also would eliminate the per-country cap that prevents immigrants from any single country to account for more than 7% of green cards issued each year.

Diversity visas

Each year, about 50,000 people receive green cards through the U.S. diversity visa program , also known as the visa lottery. Since the program began in 1995, more than 1 million immigrants have received green cards through the lottery, which seeks to diversify the U.S. immigrant population by granting visas to underrepresented nations. Citizens of countries with the most legal immigrant arrivals in recent years – such as Mexico, Canada, China and India – are not eligible to apply.

The Biden administration has proposed legislation to increase the annual total to 80,000 diversity visas. Trump had sought to eliminate the program .

In fiscal 2019, more than 188,000 high-skilled foreign workers received H-1B visas . H-1B visas accounted for 22% of all temporary visas for employment issued in 2019. This trailed only the H-2A visa for agricultural workers, which accounted for nearly a quarter (24%) of temporary visas. In all, nearly 2 million H-1B visas were issued from fiscal years 2007 to 2019.

The Biden administration is expected to review policies that led to increased denial rate s of H-1B visa applications under the Trump administration. In addition, Biden has delayed implementing a rule put in place by Trump that sought to prioritize the H-1B visa selection process based on wages, which would have raised the wages of H-1B recipients overall. Biden also proposed legislation to provide permanent work permits to spouses of H-1B visa holders. By contrast, the Trump administration had sought to restrict these permits. The Trump administration also created an electronic registration system that led to a record number of applicants for fiscal 2021.

Temporary permissions

A relatively small number of unauthorized immigrants who came to the U.S. under unusual circumstances have received temporary legal permission to stay in the country. One key distinction for this group of immigrants is that, despite having received permission to live in the U.S., most don’t have a path to gain lawful permanent residence. The following two programs are examples of this:

Deferred Action for Childhood Arrivals

About 636,000 unauthorized immigrants had temporary work permits and protection from deportation through the Deferred Action for Childhood Arrivals program, or DACA, as of Dec. 31, 2020. One of Biden’s first actions as president was to direct the federal government to take steps to preserve the program , which Trump had tried to end before the Supreme Court allowed it to remain in place . DACA recipients, sometimes called “Dreamers,” would be among the undocumented immigrants to have a path to U.S. citizenship under Biden’s immigration bill. Senators have also proposed separate legislation that would do the same.

Temporary Protected Status

Overall, it is estimated that more than 700,000 immigrants from 12 countries currently have or are eligible for a reprieve from deportation under Temporary Protected Status, or TPS , a federal program that gives time-limited permission for some immigrants from certain countries to work and live in the U.S. The program covers those who fled designated nations because of war, hurricanes, earthquakes or other extraordinary conditions that could make it dangerous for them to live there.

The estimated total number of immigrants is based on those currently registered, in addition to those estimated to be eligible from Myanmar – also called Burma – and Venezuela.

Immigrants from Venezuela and Myanmar are newly eligible for TPS under changes made after Biden took office in January 2021 by the Department of Homeland Security, which oversees the program. The government must periodically renew TPS benefits or they will expire. The department extended benefits into 2022 and beyond for eligible immigrants from nine nations: El Salvador, Haiti, Honduras, Nepal, Nicaragua, Somalia, Sudan, Syria and Yemen. In addition, the Biden administration expanded eligibility for immigrants from Haiti based on recent turmoil.

Biden and congressional Democrats have proposed granting citizenship to certain immigrants who receive TPS benefits. Under Biden’s large immigration bill, TPS recipients who meet certain conditions could apply immediately for green cards that let them become lawful permanent residents. The proposal would allow TPS holders who meet certain conditions to apply for citizenship three years after receiving a green card, which is two years earlier than usual for green-card holders. By contrast, the Trump administration had sought to end TPS for nearly all beneficiaries, but was blocked from doing so by a series of lawsuits.

Note: This is an update of a post originally published March 22, 2021.

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Six Things to Know About ‘Forever Chemicals’

The federal government is ordering the removal of PFAS, a class of chemicals that poses serious health risks, from drinking water systems across the country.

By Lisa Friedman

Almost half the tap water in the United States contains PFAS, a class of chemicals linked to serious health problems. On Wednesday, the Environmental Protection Agency announced that, for the first time, municipal utilities will have to detect and remove PFAS from drinking water.

Here’s what you need to know.

What are PFAS?

In 1938 a young chemist working on refrigerants for Dupont accidentally discovered a new compound that was remarkably resistant to water and grease, a finding that would lead to the creation of the Teflon brand of nonstick cookware.

Today there are nearly 15,000 per- and polyfluoroalkyl substances, which collectively go by the acronym PFAS, according to a database maintained by the E.P.A.

The common link is that they have a special bond of carbon and fluorine atoms, making them incredibly strong and resistant to heat, water, oil and dirt. For that reason, PFAS is used for everyday items as varied as microwave popcorn bags, water-repellent clothing and stain-resistant carpets. PFAS are also in firefighting foam, cosmetics, shampoos, toys and even dental floss.

Where are PFAS?

Everywhere, including drinking water. The indestructible nature that makes PFAS useful in some products also makes them harmful to human health. The chemicals are virtually indestructible and do not fully degrade, accumulating in the environment and the human body.

The chemicals are so ubiquitous that they can be found in the blood of almost every person in the country. One recent government study detected PFAS chemicals in nearly half of the nation’s tap water . A global study of more than 45,000 water samples around the world found that about 31 percent of tested groundwater samples that weren’t near any obvious source of contamination had PFAS levels considered harmful to human health.

What does PFAS do to the body?

According to the E.P.A., exposure to PFAS can cause damage to the liver and immune system and also has been linked to low birth weight, birth defects and developmental delays as well as increased risk of some prostate, kidney and testicular cancers. New research published in the past year found links between PFAS exposure and a delay in the onset of puberty in girls, leading to a higher incidence of breast cancer, renal disease and thyroid disease; a decrease in bone density in teenagers, potentially leading to osteoporosis; and an increased risk of Type 2 diabetes in women.

Why didn’t the E.P.A. regulate PFAS in water sooner?

Many environmental advocates argue that PFAS contamination should have been dealt with long ago.

“For generations, PFAS chemicals slid off every federal environmental law like a fried egg off a Teflon pan,” said Ken Cook, president and co-founder of the Environmental Working Group, a nonprofit advocacy group.

Activists blame chemical companies, which for decades hid evidence of the dangers of PFAS, according to lawsuits and a peer-reviewed study , published in the Annals of Global Health, of previously secret industry documents.

The new E.P.A. rule requires utilities to reduce PFAS in drinking water to near-zero levels.

How can I get rid of PFAS?

Not easily. In homes, filters attached to faucets or in pitchers generally do not remove PFAS substances. Under-sink reverse-osmosis systems have been shown to remove most but not all PFAS in studies performed by scientists at Duke University and North Carolina State University.

Municipal water systems can install one of several technologies including carbon filtration or a reverse-osmosis water filtration system that can reduce levels of the chemicals.

Now that limits have been set, when will PFAS disappear from tap water?

It could take years. Under the rule, a water system has three years to monitor and report its PFAS levels. Then, if the levels exceed the E.P.A.’s new standard, the utility will have another two years to purchase and install filtration technology.

But trade groups and local governments are expected to mount legal challenges against the regulation, potentially delaying it even before a court makes a final ruling. And if former President Donald J. Trump were to retake the White House in November, his administration could also reverse or weaken the rule.

An earlier version of this article described incorrectly the molecular structure of PFAS compounds. They have carbon and fluorine atoms, not carbon and fluoride.

How we handle corrections

Lisa Friedman is a Times reporter who writes about how governments are addressing climate change and the effects of those policies on communities. More about Lisa Friedman

The Proliferation of ‘Forever Chemicals’

Pfas, or per- and polyfluoroalkyl substances, are hazardous compounds that pose a global threat to human health..

For the first time, the U.S. government is requiring municipal water systems to detect and remove PFAS from drinking water .

A global study found harmful levels of PFAS  in water samples taken far from any obvious source of contamination.

Virtually indestructible, PFAS are used in fast-food packaging and countless household items .

PFAS lurk in much of what we eat, drink and use, but scientists are only beginning to understand how they affect our health .

Though no one can avoid forever chemicals entirely, Wirecutter offers tips on how to limit your exposure .

Scientists have spent years searching for ways to destroy forever chemicals. In 2022, a team of chemists found a cheap, effective method to break them down .

Facility for Rare Isotope Beams

At michigan state university, frib researchers lead team to merge nuclear physics experiments and astronomical observations to advance equation-of-state research, world-class particle-accelerator facilities and recent advances in neutron-star observation give physicists a new toolkit for describing nuclear interactions at a wide range of densities..

For most stars, neutron stars and black holes are their final resting places. When a supergiant star runs out of fuel, it expands and then rapidly collapses on itself. This act creates a neutron star—an object denser than our sun crammed into a space 13 to  18 miles wide. In such a heavily condensed stellar environment, most electrons combine with protons to make neutrons, resulting in a dense ball of matter consisting mainly of neutrons. Researchers try to understand the forces that control this process by creating dense matter in the laboratory through colliding neutron-rich nuclei and taking detailed measurements.

A research team—led by William Lynch and Betty Tsang at FRIB—is focused on learning about neutrons in dense environments. Lynch, Tsang, and their collaborators used 20 years of experimental data from accelerator facilities and neutron-star observations to understand how particles interact in nuclear matter under a wide range of densities and pressures. The team wanted to determine how the ratio of neutrons to protons influences nuclear forces in a system. The team recently published its findings in Nature Astronomy .

“In nuclear physics, we are often confined to studying small systems, but we know exactly what particles are in our nuclear systems. Stars provide us an unbelievable opportunity, because they are large systems where nuclear physics plays a vital role, but we do not know for sure what particles are in their interiors,” said Lynch, professor of nuclear physics at FRIB and in the Michigan State University (MSU) Department of Physics and Astronomy. “They are interesting because the density varies greatly within such large systems.  Nuclear forces play a dominant role within them, yet we know comparatively little about that role.” 

When a star with a mass that is 20-30 times that of the sun exhausts its fuel, it cools, collapses, and explodes in a supernova. After this explosion, only the matter in the deepest part of the star’s interior coalesces to form a neutron star. This neutron star has no fuel to burn and over time, it radiates its remaining heat into the surrounding space. Scientists expect that matter in the outer core of a cold neutron star is roughly similar to the matter in atomic nuclei but with three differences: neutron stars are much larger, they are denser in their interiors, and a larger fraction of their nucleons are neutrons. Deep within the inner core of a neutron star, the composition of neutron star matter remains a mystery. 

  “If experiments could provide more guidance about the forces that act in their interiors, we could make better predictions of their interior composition and of phase transitions within them. Neutron stars present a great research opportunity to combine these disciplines,” said Lynch.

Accelerator facilities like FRIB help physicists study how subatomic particles interact under exotic conditions that are more common in neutron stars. When researchers compare these experiments to neutron-star observations, they can calculate the equation of state (EOS) of particles interacting in low-temperature, dense environments. The EOS describes matter in specific conditions, and how its properties change with density. Solving EOS for a wide range of settings helps researchers understand the strong nuclear force’s effects within dense objects, like neutron stars, in the cosmos. It also helps us learn more about neutron stars as they cool.

“This is the first time that we pulled together such a wealth of experimental data to explain the equation of state under these conditions, and this is important,” said Tsang, professor of nuclear science at FRIB. “Previous efforts have used theory to explain the low-density and low-energy end of nuclear matter. We wanted to use all the data we had available to us from our previous experiences with accelerators to obtain a comprehensive equation of state.”   

Researchers seeking the EOS often calculate it at higher temperatures or lower densities. They then draw conclusions for the system across a wider range of conditions. However, physicists have come to understand in recent years that an EOS obtained from an experiment is only relevant for a specific range of densities. As a result, the team needed to pull together data from a variety of accelerator experiments that used different measurements of colliding nuclei to replace those assumptions with data. “In this work, we asked two questions,” said Lynch. “For a given measurement, what density does that measurement probe? After that, we asked what that measurement tells us about the equation of state at that density.”   

In its recent paper, the team combined its own experiments from accelerator facilities in the United States and Japan. It pulled together data from 12 different experimental constraints and three neutron-star observations. The researchers focused on determining the EOS for nuclear matter ranging from half to three times a nuclei’s saturation density—the density found at the core of all stable nuclei. By producing this comprehensive EOS, the team provided new benchmarks for the larger nuclear physics and astrophysics communities to more accurately model interactions of nuclear matter.

The team improved its measurements at intermediate densities that neutron star observations do not provide through experiments at the GSI Helmholtz Centre for Heavy Ion Research in Germany, the RIKEN Nishina Center for Accelerator-Based Science in Japan, and the National Superconducting Cyclotron Laboratory (FRIB’s predecessor). To enable key measurements discussed in this article, their experiments helped fund technical advances in data acquisition for active targets and time projection chambers that are being employed in many other experiments world-wide.   

In running these experiments at FRIB, Tsang and Lynch can continue to interact with MSU students who help advance the research with their own input and innovation. MSU operates FRIB as a scientific user facility for the U.S. Department of Energy Office of Science (DOE-SC), supporting the mission of the DOE-SC Office of Nuclear Physics. FRIB is the only accelerator-based user facility on a university campus as one of 28 DOE-SC user facilities .  Chun Yen Tsang, the first author on the Nature Astronomy  paper, was a graduate student under Betty Tsang during this research and is now a researcher working jointly at Brookhaven National Laboratory and Kent State University. 

“Projects like this one are essential for attracting the brightest students, which ultimately makes these discoveries possible, and provides a steady pipeline to the U.S. workforce in nuclear science,” Tsang said.

The proposed FRIB energy upgrade ( FRIB400 ), supported by the scientific user community in the 2023 Nuclear Science Advisory Committee Long Range Plan , will allow the team to probe at even higher densities in the years to come. FRIB400 will double the reach of FRIB along the neutron dripline into a region relevant for neutron-star crusts and to allow study of extreme, neutron-rich nuclei such as calcium-68. 

Eric Gedenk is a freelance science writer.

Michigan State University operates the Facility for Rare Isotope Beams (FRIB) as a user facility for the U.S. Department of Energy Office of Science (DOE-SC), supporting the mission of the DOE-SC Office of Nuclear Physics. Hosting what is designed to be the most powerful heavy-ion accelerator, FRIB enables scientists to make discoveries about the properties of rare isotopes in order to better understand the physics of nuclei, nuclear astrophysics, fundamental interactions, and applications for society, including in medicine, homeland security, and industry.

The U.S. Department of Energy Office of Science is the single largest supporter of basic research in the physical sciences in the United States and is working to address some of today’s most pressing challenges. For more information, visit energy.gov/science.