scholarly journals Beyond trust: Amplifying unheard voices on concerns about harm resulting from health data-sharing

2021 ◽  
Vol 5 ◽  
pp. 239920262110484
Author(s):  
Stephanie Mulrine ◽  
Mwenza Blell ◽  
Madeleine Murtagh
Keyword(s):  
Data Sharing ◽  
Large Scale ◽  
Point Of Care ◽  
Health Data ◽  
Data Generation ◽  
Health Records ◽  
North East ◽  
Marginalized Groups ◽  
Health And Social Care ◽  
Share Data

Background: The point of care in many health systems is increasingly a point of health data generation, data which may be shared and used in a variety of ways by a range of different actors. Aim: We set out to gather data about the perspectives on health data-sharing of people living in North East England who have been underrepresented within other public engagement activities and who are marginalized in society. Methods: Multi-site ethnographic fieldwork was carried out in the Teesside region of England over a 6-month period in 2019 as part of a large-scale health data innovation program called Connected Health Cities. Organizations working with marginalized groups were contacted to recruit staff, volunteers, and beneficiaries for participation in qualitative research. The data gathered were analyzed thematically and vignettes constructed to illustrate findings. Results: Previous encounters with health and social care professionals and the broader socio-political contexts of people’s lives shape the perspectives of people from marginalized groups about sharing of data from their health records. While many would welcome improved care, the risks to people with socially produced vulnerabilities must be appreciated by those advocating systems that share data for personalized medicine or other forms of data-driven care. Conclusion: Forms of innovation in medicine which rely on greater data-sharing may present risks to groups and individuals with existing vulnerabilities, and advocates of these innovations should address the lack of trustworthiness of those receiving data before asking that people trust new systems to provide health benefits.

scholarly journals Data Communities: Empowering Researcher-Driven Data Sharing in the Sciences

1970 ◽  
Vol 15 (1) ◽  
pp. 7
Author(s):  
Rebecca Springer ◽  
Danielle Cooper
Keyword(s):  
Data Sharing ◽  
Large Scale ◽  
Data Repository ◽  
Disciplinary Boundaries ◽  
Success Stories ◽  
Scholarly Communications ◽  
Information Technologists ◽  
Share Data ◽  
Technological Intervention ◽  
Informal Groups

There is a growing perception that science can progress more quickly, more innovatively, and more rigorously when researchers share data with each other. However many scientists are not engaging in data sharing and remain skeptical of its relevance to their work. As organizations and initiatives designed to promote STEM data sharing multiply – within, across, and outside academic institutions – there is a pressing need to decide strategically on the best ways to move forward. In this paper, we propose a new mechanism for conceptualizing and supporting STEM research data sharing.. Successful data sharing happens within data communities, formal or informal groups of scholars who share a certain type of data with each other, regardless of disciplinary boundaries. Drawing on the findings of four large-scale qualitative studies of research practices conducted by Ithaka S+R, as well as the scholarly literature, we identify what constitutes a data community and outline its most important features by studying three success stories, investigating the circumstances under which intensive data sharing is already happening. We contend that stakeholders who wish to promote data sharing – librarians, information technologists, scholarly communications professionals, and research funders, to name a few – should work to identify and empower emergent data communities. These are groups of scholars for whom a relatively straightforward technological intervention, usually the establishment of a data repository, could kickstart the growth of a more active data sharing culture. We conclude by offering recommendations for ways forward.

Five analytic challenges in working with electronic health records data to support clinical trials with some solutions

2020 ◽  
Vol 17 (4) ◽  
pp. 370-376
Author(s):  
Benjamin A Goldstein
Keyword(s):  
Clinical Trials ◽  
Electronic Health Records ◽  
Large Scale ◽  
Point Of Care ◽  
Cross Sectional ◽  
Health Records ◽  
Data Resource ◽  
Electronic Health ◽  
Data Elements ◽  
Data Efficiency

Electronic health records data are becoming a key data resource in clinical research. Owing to issues of data efficiency, electronic health records data are being used for clinical trials. This includes both large-scale pragmatic trails and smaller—more focused—point-of-care trials. While electronic health records data open up a number of scientific opportunities, they also present a number of analytic challenges. This article discusses five particular challenges related to organizing electronic health records data for analytic purposes. These are as follows: (1) data are not organized for research purposes, (2) data are both densely and irregularly observed, (3) we don’t have all data elements we may want or need, (4) data are both cross-sectional and longitudinal, and (5) data may be informatively observed. While laying out these challenges, the article notes how many of these challenges can be addressed by careful and thoughtful study design as well as by integration of clinicians and informaticians into the analytic team.

scholarly journals Genomic health data generation in the UK: a 360 view

2021 ◽  
Author(s):  
Elizabeth Ormondroyd ◽  
Peter Border ◽  
Judith Hayward ◽  
Andrew Papanikitas
Keyword(s):  
Health Service ◽  
Large Scale ◽  
Social Issues ◽  
Genomic Medicine ◽  
Health Data ◽  
Clinical Indication ◽  
Data Generation ◽  
Future Health ◽  
Genomic Test ◽  
The Uk

AbstractIn the UK, genomic health data is being generated in three major contexts: the healthcare system (based on clinical indication), in large scale research programmes, and for purchasers of direct-to-consumer genetic tests. The recently delivered hybrid clinical/research programme, 100,000 Genomes Project set the scene for a new Genomic Medicine Service, through which the National Health Service aims to deliver consistent and equitable care informed by genomics, while providing data to inform academic and industry research and development. In parallel, a large scale research study, Our Future Health, has UK Government and Industry investment and aims to recruit 5 million volunteers to support research intended to improve early detection, risk stratification, and early intervention for chronic diseases. To explore how current models of genomic health data generation intersect, and to understand clinical, ethical, legal, policy and social issues arising from this intersection, we conducted a series of five multidisciplinary panel discussions attended by 28 invited stakeholders. Meetings were recorded and transcribed. We present a summary of issues identified: genomic test attributes; reasons for generating genomic health data; individuals’ motivation to seek genomic data; health service impacts; role of genetic counseling; equity; data uses and security; consent; governance and regulation. We conclude with some suggestions for policy consideration.

scholarly journals Health Care Professionals’ Perspectives on the Secondary Use of Health Records to Improve Quality and Safety of Care in England: Qualitative Study

10.2196/14135 ◽  
2019 ◽  
Vol 21 (9) ◽  
pp. e14135
Author(s):  
Ana Luísa Neves ◽  
Dilkushi Poovendran ◽  
Lisa Freise ◽  
Saira Ghafur ◽  
Kelsey Flott ◽  
...  
Keyword(s):  
Health Care ◽  
Data Sharing ◽  
Health Care Professionals ◽  
Research Quality ◽  
Successful Implementation ◽  
Framework Analysis ◽  
Health Records ◽  
Health Care Data ◽  
North East ◽  
High Level

Background Health care professionals (HCPs) are often patients’ first point of contact in what concerns the communication of the purposes, benefits, and risks of sharing electronic health records (EHRs) for nondirect care purposes. Their engagement is fundamental to ensure patients’ buy-in and a successful implementation of health care data sharing schemes. However, their views on this subject are seldom evaluated. Objective This study aimed to explore HCPs’ perspectives on the secondary uses of health care data in England. Specifically, we aimed to assess their knowledge on its purposes and the main concerns about data sharing processes. Methods A total of 30 interviews were conducted between March 27, 2017, and April 7, 2017, using a Web-based interview platform and following a topic guide with open-ended questions. The participants represented a variety of geographic locations across England (London, West Midlands, East of England, North East England, and Yorkshire and the Humber), covering both primary and secondary care services. The transcripts were compiled verbatim and systematically reviewed by 2 independent reviewers using the framework analysis method to identify emerging themes. Results HCPs were knowledgeable about the possible secondary uses of data and highlighted its importance for patient profiling and tailored care, research, quality assurance, public health, and service delivery planning purposes. Main concerns toward data sharing included data accuracy, patients’ willingness to share their records, challenges on obtaining free and informed consent, data security, lack of adequacy or understanding of current policies, and potential patient exposure and exploitation. Conclusions These results suggest a high level of HCPs’ understanding about the purposes of data sharing for secondary purposes; however, some concerns still remain. A better understanding of HCPs’ knowledge and concerns could inform national communication policies and improve tailoring to maximize efficiency and improve patients’ buy-in.

scholarly journals Data sharing practices and data availability upon request differ across scientific disciplines

2021 ◽  
Vol 8 (1) ◽  
Author(s):  
Leho Tedersoo ◽  
Rainer Küngas ◽  
Ester Oras ◽  
Kajar Köster ◽  
Helen Eenmaa ◽  
...  
Keyword(s):  
Data Sharing ◽  
Large Scale ◽  
Modern Science ◽  
Research Data ◽  
Data Availability ◽  
Research Articles ◽  
Scientific Disciplines ◽  
Funding Agencies ◽  
Share Data ◽  
Bonus Points

AbstractData sharing is one of the cornerstones of modern science that enables large-scale analyses and reproducibility. We evaluated data availability in research articles across nine disciplines in Nature and Science magazines and recorded corresponding authors’ concerns, requests and reasons for declining data sharing. Although data sharing has improved in the last decade and particularly in recent years, data availability and willingness to share data still differ greatly among disciplines. We observed that statements of data availability upon (reasonable) request are inefficient and should not be allowed by journals. To improve data sharing at the time of manuscript acceptance, researchers should be better motivated to release their data with real benefits such as recognition, or bonus points in grant and job applications. We recommend that data management costs should be covered by funding agencies; publicly available research data ought to be included in the evaluation of applications; and surveillance of data sharing should be enforced by both academic publishers and funders. These cross-discipline survey data are available from the plutoF repository.

scholarly journals Consumers’ Intentions to Adopt Blockchain-Based Personal Health Records and Data Sharing: Focus Group Study (Preprint)

2020 ◽  
Author(s):  
Chang Lu ◽  
Danielle Batista ◽  
Hoda Hamouda ◽  
Victoria Lemieux
Keyword(s):  
Health Care ◽  
Focus Group ◽  
Data Sharing ◽  
Health Data ◽  
Personal Health Records ◽  
Third Party ◽  
Personal Health ◽  
Health Records ◽  
The Third ◽  
The Third Party

BACKGROUND Although researchers are giving increased attention to blockchain-based personal health records (PHRs) and data sharing, the majority of research focuses on technical design. Very little is known about health care consumers’ intentions to adopt the applications. OBJECTIVE This study aims to explore the intentions and concerns of health care consumers regarding the adoption of blockchain-based personal health records and data sharing. METHODS Three focus groups were conducted, in which 26 participants were shown a prototype of a user interface for a self-sovereign blockchain-based PHR system (ie, a system in which the individual owns, has custody of, and controls access to their personal health information) to be used for privacy and secure health data sharing. A microinterlocutor analysis of focus group transcriptions was performed to show a descriptive overview of participant responses. NVivo 12.0 was used to code the categories of the responses. RESULTS Participants did not exhibit a substantial increase in their willingness to become owners of health data and share the data with third parties after the blockchain solution was introduced. Participants were concerned about the risks of losing private keys, the resulting difficulty in accessing care, and the irrevocability of data access on blockchain. They did, however, favor a blockchain-based PHR that incorporates a private key recovery system and offers a health wallet hosted by government or other positively perceived organizations. They were more inclined to share data via blockchain if the third party used the data for collective good and offered participants nonmonetary forms of compensation and if the access could be revoked from the third party. CONCLUSIONS Health care consumers were not strongly inclined to adopt blockchain-based PHRs and health data sharing. However, their intentions may increase when the concerns and recommendations demonstrated in this study are considered in application design.

scholarly journals Consumers’ Intentions to Adopt Blockchain-Based Personal Health Records and Data Sharing: Focus Group Study

10.2196/21995 ◽  
2020 ◽  
Vol 4 (11) ◽  
pp. e21995
Author(s):  
Chang Lu ◽  
Danielle Batista ◽  
Hoda Hamouda ◽  
Victoria Lemieux
Keyword(s):  
Health Care ◽  
Focus Group ◽  
Data Sharing ◽  
Health Data ◽  
Personal Health Records ◽  
Third Party ◽  
Personal Health ◽  
Health Records ◽  
The Third ◽  
The Third Party

Background Although researchers are giving increased attention to blockchain-based personal health records (PHRs) and data sharing, the majority of research focuses on technical design. Very little is known about health care consumers’ intentions to adopt the applications. Objective This study aims to explore the intentions and concerns of health care consumers regarding the adoption of blockchain-based personal health records and data sharing. Methods Three focus groups were conducted, in which 26 participants were shown a prototype of a user interface for a self-sovereign blockchain-based PHR system (ie, a system in which the individual owns, has custody of, and controls access to their personal health information) to be used for privacy and secure health data sharing. A microinterlocutor analysis of focus group transcriptions was performed to show a descriptive overview of participant responses. NVivo 12.0 was used to code the categories of the responses. Results Participants did not exhibit a substantial increase in their willingness to become owners of health data and share the data with third parties after the blockchain solution was introduced. Participants were concerned about the risks of losing private keys, the resulting difficulty in accessing care, and the irrevocability of data access on blockchain. They did, however, favor a blockchain-based PHR that incorporates a private key recovery system and offers a health wallet hosted by government or other positively perceived organizations. They were more inclined to share data via blockchain if the third party used the data for collective good and offered participants nonmonetary forms of compensation and if the access could be revoked from the third party. Conclusions Health care consumers were not strongly inclined to adopt blockchain-based PHRs and health data sharing. However, their intentions may increase when the concerns and recommendations demonstrated in this study are considered in application design.

scholarly journals Exploring public attitudes towards data sharing and linkage in health and social care

2018 ◽  
Vol 3 (4) ◽  
Author(s):  
Jo Hobbs ◽  
Mary Tully ◽  
Iqra Ali
Keyword(s):  
Data Sharing ◽  
Frequency Analysis ◽  
Thematic Analysis ◽  
Social Care ◽  
Health Data ◽  
Access To Treatment ◽  
Social License ◽  
Health And Social Care ◽  
Privacy And Confidentiality ◽  
Public Concerns

IntroductionThe devolvement of health and social care in Greater Manchester, England provides the private and public sectors with a unique opportunity to build comprehensive information sharing agreements. Shared information governance is key to enabling the rapid sharing of data which will underpin our ability to radically transform population health. Objectives and ApproachIn 2013 the UK Government introduced a data sharing opt-out programme called Care.data. This programme aimed to extract data at GP level and anonymise data which could then be shared amongst those inside and outside the NHS. This programme was greeted with widespread public mistrust and abandoned in 2016. Care.data demonstrated that public concerns can de-rail efforts to improve data sharing. The key objective for this piece of work was to use public engagement activities as a means of identifying and unpicking public concerns about data-linkage and sharing as part of wider efforts to establish a social license in health. ResultsDiscursive responses were analysed using thematic analysis and word frequency analysis. Combining thematic analysis and word frequency analysis helped to unpack the data by facilitating the identification and perceived importance of broad themes and sub-themes. To date, analysis has identified a number of ‘Global Themes’ and 'Sub-themes' which will need to be addressed before we can establish a social license in health and social care with the public: Global Themes related to: Trust/mistrust Privacy and confidentiality/breaches of privacy and confidentiality Sub-themes related to: Security of systems Rest of the world security What a third party might do with health data Data ownership Health data being used for private and or commercial profit How others perceive you Access to future treatment Conclusion/ImplicationsOur deliberative discussions indicated concerns across culture and ethnic groups that data-sharing and linkage might be used to ‘gate-keep’ future access to treatment. Given that congruent social licenses are built on legitimacy, credibility and trust further work is required to allay public fears regarding future access to treatment.

scholarly journals Addressing health disparities in the Food and Drug Administration’s artificial intelligence and machine learning regulatory framework

2020 ◽  
Vol 27 (12) ◽  
pp. 2016-2019
Author(s):  
Kadija Ferryman
Keyword(s):  
Artificial Intelligence ◽  
Machine Learning ◽  
Health Disparities ◽  
Medical Devices ◽  
Health Data ◽  
Learning Tools ◽  
Regulatory Oversight ◽  
Health Records ◽  
Marginalized Groups ◽  
Health Applications

Abstract The exponential growth of health data from devices, health applications, and electronic health records coupled with the development of data analysis tools such as machine learning offer opportunities to leverage these data to mitigate health disparities. However, these tools have also been shown to exacerbate inequities faced by marginalized groups. Focusing on health disparities should be part of good machine learning practice and regulatory oversight of software as medical devices. Using the Food and Drug Administration (FDA)'s proposed framework for regulating machine learning tools in medicine, I show that addressing health disparities during the premarket and postmarket stages of review can help anticipate and mitigate group harms.

scholarly journals Health Care Professionals’ Perspectives on the Secondary Use of Health Records to Improve Quality and Safety of Care in England: Qualitative Study (Preprint)

2019 ◽  
Author(s):  
Ana Luísa Neves ◽  
Dilkushi Poovendran ◽  
Lisa Freise ◽  
Saira Ghafur ◽  
Kelsey Flott ◽  
...  
Keyword(s):  
Health Care ◽  
Data Sharing ◽  
Health Care Professionals ◽  
Research Quality ◽  
Successful Implementation ◽  
Framework Analysis ◽  
Health Records ◽  
Health Care Data ◽  
North East ◽  
High Level

BACKGROUND Health care professionals (HCPs) are often patients’ first point of contact in what concerns the communication of the purposes, benefits, and risks of sharing electronic health records (EHRs) for nondirect care purposes. Their engagement is fundamental to ensure patients’ buy-in and a successful implementation of health care data sharing schemes. However, their views on this subject are seldom evaluated. OBJECTIVE This study aimed to explore HCPs’ perspectives on the secondary uses of health care data in England. Specifically, we aimed to assess their knowledge on its purposes and the main concerns about data sharing processes. METHODS A total of 30 interviews were conducted between March 27, 2017, and April 7, 2017, using a Web-based interview platform and following a topic guide with open-ended questions. The participants represented a variety of geographic locations across England (London, West Midlands, East of England, North East England, and Yorkshire and the Humber), covering both primary and secondary care services. The transcripts were compiled verbatim and systematically reviewed by 2 independent reviewers using the framework analysis method to identify emerging themes. RESULTS HCPs were knowledgeable about the possible secondary uses of data and highlighted its importance for patient profiling and tailored care, research, quality assurance, public health, and service delivery planning purposes. Main concerns toward data sharing included data accuracy, patients’ willingness to share their records, challenges on obtaining free and informed consent, data security, lack of adequacy or understanding of current policies, and potential patient exposure and exploitation. CONCLUSIONS These results suggest a high level of HCPs’ understanding about the purposes of data sharing for secondary purposes; however, some concerns still remain. A better understanding of HCPs’ knowledge and concerns could inform national communication policies and improve tailoring to maximize efficiency and improve patients’ buy-in.

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