Challenges and opportunities of centring the African voice in disability research.

In 2020, the African Network of Evidence to Action on Disability (also known as AFRINEAD) hosted its 10th conference in Cape Town. This paper synthesises inputs by the three authors as plenary addresses, particularly focusing on the challenges and opportunities of centring African voices in disability research. Our concern in this article is to engage with the question of exclusion as an issue not just in the everyday lives of people with disabilities but also in the world of ideas - the ideational space. We suggest that a reimagined disability study depends on the centring of African experiences, voices and knowledges. This is especially so as there are African concepts that are not rigorously pursued in research. African Renaissance thinking makes allowance not only for critically reflecting on the historical and contemporary constructs of disability but also for fashioning a higher civilisation in which people with disabilities can exist within society as worthy and valued human beings.

Assistive Technology during the COVID-19 Global Pandemic: The Roles of Government and Civil Society in Fulfilling the Social Contract.

The COVID-19 pandemic imposed significant challenges to users of assistive technology (AT). Three key issues emerged from a series of structured qualitative interviews with 35 AT users in six low- and middle-income countries. These were (1) access to information about COVID-19 and available supports and policies, (2) insufficiency of the government response to meet the needs of AT users, and (3) the response of civil society which partially offset the gap in government response. AT users noted the need for better communication, improved planning for the delivery and maintenance of AT during times of crisis, and higher-quality standards to ensure the availability of appropriate technology.

A comprehensive scoping review of Bayesian networks in healthcare: Past, present and future.

No comprehensive review of Bayesian networks (BNs) in healthcare has been published in the past, making it difficult to organize the research contributions in the present and identify challenges and neglected areas that need to be addressed in the future. This unique and novel scoping review of BNs in healthcare provides an analytical framework for comprehensively characterizing the domain and its current state. A literature search of health and health informatics literature databases using relevant keywords found 3810 articles that were reduced to 123. This was after screening out those presenting Bayesian statistics, meta-analysis or neural networks, as opposed to BNs and those describing the predictive performance of multiple machine learning algorithms, of which BNs were simply one type. Using the novel analytical framework, we show that: (1) BNs in healthcare are not used to their full potential; (2) a generic BN development process is lacking; (3) limitations exist in the way BNs in healthcare are presented in the literature, which impacts understanding, consensus towards systematic methodologies, practice and adoption; and (4) a gap exists between having an accurate BN and a useful BN that impacts clinical practice. This review highlights several neglected issues, such as restricted aims of BNs, ad hoc BN development methods, and the lack of BN adoption in practice and reveals to researchers and clinicians the need to address these problems. To map the way forward, the paper proposes future research directions and makes recommendations regarding BN development methods and adoption in practice.

Bayesian networks in healthcare: What is preventing their adoption?

There has been much research effort expended toward the use of Bayesian networks (BNs) in medical decision-making. However, because of the gap between developing an accurate BN and demonstrating its clinical usefulness, this has not resulted in any widespread BN adoption in clinical practice. This paper investigates this problem with the aim of finding an explanation and ways to address the problem through a comprehensive literature review of articles describing BNs in healthcare. Based on the literature collection that has been systematically narrowed down from 3810 to 116 most relevant articles, this paper analyses the benefits, barriers and facilitating factors (BBF) for implementing BN-based systems in healthcare using the ITPOSMO-BBF framework. A key finding is that works in the literature rarely consider barriers and even when these were identified they were not connected to facilitating factors. The main finding is that the barriers can be grouped into: (1) data inadequacies; (2) clinicians' resistance to new technologies; (3) lack of clinical credibility; (4) failure to demonstrate clinical impact; (5) absence of an acceptable predictive performance; and (6) absence of evidence for model's generalisability. The facilitating factors can be grouped into: (1) data collection improvements; (2) software and technological improvements; (3) having interpretable and easy to use BN-based systems; (4) clinical involvement in the development or review of the model; (5) investigation of model's clinical impact; (6) internal validation of the model's performance; and (7) external validation of the model. These groupings form a strong basis for a generic framework that could be used for formulating strategies for ensuring BN-based clinical decision-support system adoption in frontline care settings. The output of this review is expected to enhance the dialogue among researchers by providing a deeper understanding for the neglected issue of BN adoption in practice and promoting efforts for implementing BN-based systems.

Bayesian networks in healthcare: Distribution by medical condition.

Bayesian networks (BNs) have received increasing research attention that is not matched by adoption in practice and yet have potential to significantly benefit healthcare. Hitherto, research works have not investigated the types of medical conditions being modelled with BNs, nor whether there are any differences in how and why they are applied to different conditions. This research seeks to identify and quantify the range of medical conditions for which healthcare-related BN models have been proposed, and the differences in approach between the most common medical conditions to which they have been applied. We found that almost two-thirds of all healthcare BNs are focused on four conditions: cardiac, cancer, psychological and lung disorders. We believe there is a lack of understanding regarding how BNs work and what they are capable of, and that it is only with greater understanding and promotion that we may ever realise the full potential of BNs to effect positive change in daily healthcare practice.

Data Visualisation in Midwifery: The Challenge of Seeing what Datasets Hide.

Information visualisation is transforming data into visual representations to convey information hidden within large datasets. Information visualisation in medicine is underdeveloped. In midwifery, the impact of different graphs on clinicians' and patients' understanding is not well understood. We investigate this gap and its potential consequences.

Towards standardisation of evidence-based clinical care process specifications.

There is a strong push towards standardisation of treatment approaches, care processes and documentation of clinical practice. However, confusion persists regarding terminology and description of many clinical care process specifications which this research seeks to resolve by developing a taxonomic characterisation of clinical care process specifications. Literature on clinical care process specifications was analysed, creating the starting point for identifying common characteristics and how each is constructed and used in the clinical setting. A taxonomy for clinical care process specifications is presented. The De Bleser approach to limited clinical care process specifications characterisation was extended and each clinical care process specification is successfully characterised in terms of purpose, core elements and relationship to the other clinical care process specification types. A case study on the diagnosis and treatment of Type 2 Diabetes in the United Kingdom was used to evaluate the taxonomy and demonstrate how the characterisation framework applies. Standardising clinical care process specifications ensures that the format and content are consistent with expectations, can be read more quickly and high-quality information can be recorded about the patient. Standardisation also enables computer interpretability, which is important in integrating Learning Health Systems into the modern clinical environment. The approach presented allows terminologies for clinical care process specifications that were widely used interchangeably to be easily distinguished, thus, eliminating the existing confusion.

A framework for analysing learning health systems: Are we removing the most impactful barriers?

INTRODUCTION: Learning health systems (LHS) are one of the major computing advances in health care. However, no prior research has systematically analysed barriers and facilitators for LHS. This paper presents an investigation into the barriers, benefits, and facilitating factors for LHS in order to create a basis for their successful implementation and adoption. METHODS: First, the ITPOSMO-BBF framework was developed based on the established ITPOSMO (information, technology, processes, objectives, staffing, management, and other factors) framework, extending it for analysing barriers, benefits, and facilitators. Second, the new framework was applied to LHS. RESULTS: We found that LHS shares similar barriers and facilitators with electronic health records (EHR); in particular, most facilitator effort in implementing EHR and LHS goes towards barriers categorised as human factors, even though they were seen to carry fewer benefits. Barriers whose resolution would bring significant benefits in safety, quality, and health outcomes remain.LHS envisage constant generation of new clinical knowledge and practice based on the central role of collections of EHR. Once LHS are constructed and operational, they trigger new data streams into the EHR. So LHS and EHR have a symbiotic relationship. The implementation and adoption of EHRs have proved and continues to prove challenging, and there are many lessons for LHS arising from these challenges. CONCLUSIONS: Successful adoption of LHS should take account of the framework proposed in this paper, especially with respect to its focus on removing barriers that have the most impact.

LAGOS: learning health systems and how they can integrate with patient care.

PROBLEM: Learning health systems (LHS) are an underexplored concept. How LHS will operate in clinical practice is not well understood. This paper investigates the relationships between LHS, clinical care process specifications (CCPS) and the established levels of medical practice to enable LHS integration into daily healthcare practice. METHODS: Concept analysis and thematic analysis were used to develop an LHS characterisation. Pathway theory was used to create a framework by relating LHS, CCPS, health information systems and the levels of medical practice. A case study approach evaluates the framework in an established health informatics project. RESULTS: Five concepts were identified and used to define the LHS learning cycle. A framework was developed with five pathways, each having three levels of practice specificity spanning population to precision medicine. The framework was evaluated through application to case studies not previously understood to be LHS. DISCUSSION: Clinicians show limited understanding of LHS, increasing resistance and limiting adoption and integration into care routine. Evaluation of the presented framework demonstrates that its use enables: (1) correct analysis and characterisation of LHS; (2) alignment and integration into the healthcare conceptual setting; (3) identification of the degree and level of patient application; and (4) impact on the overall healthcare system. CONCLUSION: This paper contributes a theoretical framework for analysis, characterisation and use of LHS. The framework allows clinicians and informaticians to correctly identify, characterise and integrate LHS within their daily routine. The overall contribution improves understanding, practice and evaluation of the LHS application in healthcare.

The Heimdall Framework for Supporting Characterisation of Learning Health Systems.

BACKGROUND: Learning Health Systems (LHS) can focus population medicine and Evidence Based Practice; smart technology delivering the next generation of improved healthcare described as Precision Medicine, and yet researchers in the LHS domain presently lack the ability to recognise their relevant works as falling within this domain. OBJECTIVE: To review LHS literature and develop a framework describing the domain that can be used as a tool to analyse the literature and support researchers to identify health informatics investigations as falling with the domain of LHS. METHOD: A scoping review is used to identify literature on which analysis was performed. This resolved the ontology and framework. The ontology was applied to quantify the distribution of classifications of LHS solutions. The framework was used to analyse and characterise the various works within the body of LHS literature. RESULTS: The ontology and framework developed was shown to be easily applicable to the literature, consistently describing and representing the goals, intentions and solutions of each LHS investigation in the literature. More proposed or potential solutions are described in the literature than implemented LHS. This suggests immaturity in the domain and points to the existence of barriers preventing LHS realisation. CONCLUSION: The lack of an ontology and framework may have been one of the causes for the failure to describe research works as falling within the LHS domain. Using our ontology and framework, LHS research works could be easily classified, demonstrating the comprehensiveness of our approach in contrast to earlier efforts.

Synthea: An approach, method, and software mechanism for generating synthetic patients and the synthetic electronic health care record.

OBJECTIVE: Our objective is to create a source of synthetic electronic health records that is readily available; suited to industrial, innovation, research, and educational uses; and free of legal, privacy, security, and intellectual property restrictions. MATERIALS AND METHODS: We developed Synthea, an open-source software package that simulates the lifespans of synthetic patients, modeling the 10 most frequent reasons for primary care encounters and the 10 chronic conditions with the highest morbidity in the United States. RESULTS: Synthea adheres to a previously developed conceptual framework, scales via open-source deployment on the Internet, and may be extended with additional disease and treatment modules developed by its user community. One million synthetic patient records are now freely available online, encoded in standard formats (eg, Health Level-7 [HL7] Fast Healthcare Interoperability Resources [FHIR] and Consolidated-Clinical Document Architecture), and accessible through an HL7 FHIR application program interface. DISCUSSION: Health care lags other industries in information technology, data exchange, and interoperability. The lack of freely distributable health records has long hindered innovation in health care. Approaches and tools are available to inexpensively generate synthetic health records at scale without accidental disclosure risk, lowering current barriers to entry for promising early-stage developments. By engaging a growing community of users, the synthetic data generated will become increasingly comprehensive, detailed, and realistic over time. CONCLUSION: Synthetic patients can be simulated with models of disease progression and corresponding standards of care to produce risk-free realistic synthetic health care records at scale.

Adolescent Health, Global Guidelines Versus Local Realities: The Sub-Saharan Africa Experience.

As the field of adolescent sexual and reproductive health (ASRH) evolves, further discussion and documentation of national policy and aspects of its implementation is needed to ensure effectiveness of interventions. Further research is required to foster beneficial shifts in policy advocacy, including resource allocation, and in the prioritization of adolescent programs in health and education systems, in communities and in workplaces. Adolescents are exposed to diverse interventions across all the countries under discussion; however there exist obstacles to realization of ASRH goals. In some countries, there exist a conflict of interest between national laws and global policy guidelines on ASRH; moreover national laws and policies are ambiguous and inconsistent. In addition, there have been strong negligence of vulnerable groups such as HIV positive adolescents, pregnant street youth; young sex workers; orphans; adolescents in conflict areas; adolescent refugees; adolescent girls working in the informal sectors and very young adolescents, likewise many adolescents in rural areas remain largely underserved. Furthermore there are consistently less disaggregated data available on adolescents' key indicators for comparative purposes signifying considerable knowledge gaps. There are multiple obstacles to the realization of ASRH and need for research combining both qualitative and quantitative approaches to determine the extent to which factors are either conducive or impeding to consistency between global guidelines, national ASRH policies, and actual policy implementation.