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Views of Ethical Best Practices in Sharing Individual-Level Data From Medical and Public Health Research: A Systematic Scoping Review.

ABSTRACT: There is increasing support for sharing individual-level data generated by medical and public health research. This scoping review of empirical research and conceptual literature examined stakeholders' perspectives of ethical best practices in data sharing, particularly in low- and middle-income settings. Sixty-nine empirical and conceptual articles were reviewed, of which, only five were empirical studies and eight were conceptual articles focusing on low- and middle-income settings. We conclude that support for sharing individual-level data is contingent on the development and implementation of international and local policies and processes to support ethical best practices. Further conceptual and empirical research is needed to ensure data sharing policies and processes in low- and middle-income settings are appropriately informed by stakeholders' perspectives.

SUBMITTER: Bull S

PROVIDER: S-EPMC4548478 | biostudies-literature | 2015 Jul

REPOSITORIES: biostudies-literature

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Views of Ethical Best Practices in Sharing Individual-Level Data From Medical and Public Health Research: A Systematic Scoping Review.

Bull Susan S Roberts Nia N Parker Michael M

Journal of empirical research on human research ethics : JERHRE 20150701 3

There is increasing support for sharing individual-level data generated by medical and public health research. This scoping review of empirical research and conceptual literature examined stakeholders' perspectives of ethical best practices in data sharing, particularly in low- and middle-income settings. Sixty-nine empirical and conceptual articles were reviewed, of which, only five were empirical studies and eight were conceptual articles focusing on low- and middle-income settings. We conclud ...[more]

PMID: 26297745

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Project description:BackgroundIn recent years, innovations in artificial intelligence (AI) have led to the development of new healthcare AI (HCAI) technologies. Whilst some of these technologies show promise for improving the patient experience, ethicists have warned that AI can introduce and exacerbate harms and wrongs in healthcare. It is important that HCAI reflects the values that are important to people. However, involving patients and publics in research about AI ethics remains challenging due to relatively limited awareness of HCAI technologies. This scoping review aims to map how the existing literature on publics' views on HCAI addresses key issues in AI ethics and governance.MethodsWe developed a search query to conduct a comprehensive search of PubMed, Scopus, Web of Science, CINAHL, and Academic Search Complete from January 2010 onwards. We will include primary research studies which document publics' or patients' views on machine learning HCAI technologies. A coding framework has been designed and will be used capture qualitative and quantitative data from the articles. Two reviewers will code a proportion of the included articles and any discrepancies will be discussed amongst the team, with changes made to the coding framework accordingly. Final results will be reported quantitatively and qualitatively, examining how each AI ethics issue has been addressed by the included studies.DiscussionConsulting publics and patients about the ethics of HCAI technologies and innovations can offer important insights to those seeking to implement HCAI ethically and legitimately. This review will explore how ethical issues are addressed in literature examining publics' and patients' views on HCAI, with the aim of determining the extent to which publics' views on HCAI ethics have been addressed in existing research. This has the potential to support the development of implementation processes and regulation for HCAI that incorporates publics' values and perspectives.

Project description:BackgroundFacilitation is an implementation strategy that supports the uptake of evidence-based practices. Recently, use of virtual facilitation (VF), or the application of facilitation using primarily video-based conferencing technologies, has become more common, especially since the COVID-19 pandemic. Thorough assessment of the literature on VF, however, is lacking. This scoping review aimed to identify and describe conceptual definitions of VF, evaluate the consistency of terminology, and recommend "best" practices for its use as an implementation strategy.MethodsWe conducted a scoping review to identify literature on VF following the PRISMA-ScR guidance. A search of PubMed, Embase, Web of Science, and CINAHL databases was conducted in June 2022 for English language articles published from January 2012 through May 2022 and repeated in May 2023 for articles published from January 2012 through April 2023. Identified articles, including studies and conference abstracts describing VF, were uploaded into Covidence and screened independently by two reviewers. Data extraction was done by two reviewers in Microsoft Excel; additionally, studies were evaluated based on the Proctor et al. (2013) reporting guidelines for specifying details of implementation strategies.ResultsThe search strategy identified 19 articles. After abstract and full-text screening, eight studies described by 10 articles/abstracts were included in analysis. Best practices summarized across studies included (1) stakeholder engagement, (2) understanding the recipient's organization, (3) facilitator training, (4) piloting, (5) evaluating facilitation, (6) use of group facilitation to encourage learning, and (7) integrating novel tools for virtual interaction. Three papers reported all or nearly all components of the Proctor et al. reporting guidelines; justification for use of VF was the most frequently omitted.ConclusionsThis scoping review evaluated available literature on use of VF as a primary implementation strategy and identified significant variability on how VF is reported, including inconsistent terminology, lack of details about how and why it was conducted, and limited adherence to published reporting guidelines. These inconsistencies impact generalizability of these methods by preventing replicability and full understanding of this emerging methodology. More work is needed to develop and evaluate best practices for effective VF to promote uptake of evidence-based interventions.Trial registrationN/A.

Dataset Information

Views of Ethical Best Practices in Sharing Individual-Level Data From Medical and Public Health Research: A Systematic Scoping Review.

Publications

Views of Ethical Best Practices in Sharing Individual-Level Data From Medical and Public Health Research: A Systematic Scoping Review.

Similar Datasets

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