scholarly journals Perceptions of anonymised data use and awareness of the NHS data opt-out amongst patients, carers and healthcare staff

2020 ◽  
Author(s):  
Catherine Atkin ◽  
Benjamin L Crosby ◽  
Kevin W Dunn ◽  
Gary Price ◽  
Eliot D Marston ◽  
...  
Keyword(s):  
Public Involvement ◽  
Public Awareness ◽  
Data Use ◽  
Health Data ◽  
Healthcare Staff ◽  
Patient Benefit ◽  
The Public ◽  
Healthcare Data ◽  
Secondary Use ◽  
Opt Out

Introduction: Public awareness and support for secondary health data use may vary by health care experience and participant demographics. England provides an example of a centralised opt-out for secondary use of anonymised health data. We explored the awareness, support for and concerns about anonymised healthcare data secondary use and the NHS data opt-out system amongst patients, carers, healthcare staff and the public within the West Midlands. Methods: A patient and public engagement program was completed, including patient and public workshops, questionnaires regarding anonymised health data use and feedback discussion groups. Results: Central concerns for health data use included unauthorised data re-use, the potential for discrimination and profit generation without patient benefit. Key priorities were projects leading to patient benefit, oversight by the NHS as a trusted organisation, increasing awareness of the NHS data opt-out, and ongoing public/patient involvement. Questionnaires showed 31.8% were aware of the NHS data opt-out. 93.8% were happy for their data to be used for NHS research, 84.8% for academic research and 68.4% by health companies. However, opinion varied with demographics (age, gender or public, patient, NHS staff and volunteers). Agreed action points for health data use were education regarding the National Data Opt-Out, public involvement in data requests, NHS oversight, and transparency. Conclusion: Use of anonymised healthcare data for secondary purposes is acceptable to most patients, carers and healthcare workers. However, awareness is limited, and initiatives to publicise potential benefits are needed amongst patients, healthcare staff and the public.

scholarly journals Perceptions of anonymised data use and awareness of the NHS data opt-out amongst patients, carers and healthcare staff

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
C. Atkin ◽  
B. Crosby ◽  
K. Dunn ◽  
G. Price ◽  
E. Marston ◽  
...  
Keyword(s):  
Data Sharing ◽  
Public Awareness ◽  
Data Use ◽  
Academic Research ◽  
Secondary Data ◽  
Data Access ◽  
Health Data ◽  
Healthcare Staff ◽  
Secondary Use ◽  
Opt Out

Abstract Background England operates a National Data Opt-Out (NDOO) for the secondary use of confidential health data for research and planning. We hypothesised that public awareness and support for the secondary use of health data and the NDOO would vary by participant demography and healthcare experience. We explored patient/public awareness and perceptions of secondary data use, grouping potential researchers into National Health Service (NHS), academia or commercial. We assessed awareness of the NDOO system amongst patients, carers, healthcare staff and the public. We co-developed recommendations to consider when sharing unconsented health data for research. Methods A patient and public engagement program, co-created and including patient and public workshops, questionnaires and discussion groups regarding anonymised health data use. Results There were 350 participants in total. Central concerns for health data use included unauthorised data re-use, the potential for discrimination and data sharing without patient benefit. 94% of respondents were happy for their data to be used for NHS research, 85% for academic research and 68% by health companies, but less than 50% for non-healthcare companies and opinions varied with demography and participant group. Questionnaires showed that knowledge of the NDOO was low, with 32% of all respondents, 53% of all NHS staff and 29% of all patients aware of the NDOO. Recommendations to guide unconsented secondary health data use included that health data use should benefit patients; data sharing decisions should involve patients/public. That data should remain in close proximity to health services with the principles of data minimisation applied. Further, that there should be transparency in secondary health data use, including publicly available lists of projects, summaries and benefits. Finally, organisations involved in data access decisions should participate in programmes to increase knowledge of the NDOO, to ensure public members were making informed choices about their own data. Conclusion The majority of participants in this study reported that the use of healthcare data for secondary purposes was acceptable when accessed by NHS. Academic and health-focused companies. However, awareness was limited, including of the NDOO. Further development of publicly-agreed recommendations for secondary health data use may improve both awareness and confidence in secondary health data use.

scholarly journals Consent and the ethical duty to participate in health data research

2018 ◽  
Vol 44 (6) ◽  
pp. 392-396 ◽  
Author(s):  
Angela Ballantyne ◽  
G Owen Schaefer
Keyword(s):  
Health Information ◽  
Review Process ◽  
Data Use ◽  
Health Data ◽  
Institutional Review Board ◽  
Observational Research ◽  
The Public ◽  
Secondary Use ◽  
Ethical Duty ◽  
Institutional Review

The predominant view is that a study using health data is observational research and should require individual consent unless it can be shown that gaining consent is impractical. But recent arguments have been made that citizens have an ethical obligation to share their health information for research purposes. In our view, this obligation is sufficient ground to expand the circumstances where secondary use research with identifiable health information is permitted without explicit subject consent. As such, for some studies the Institutional Review Board/Research Ethics Committee review process should not assess the practicality of gaining consent for data use. Instead the review process should focus on assessing the public good of the research, public engagement and transparency.

Public Attitudes Toward the Secondary Uses of Patient Records for Pharmaceutical Companies’ Activities in Japan

2019 ◽  
pp. 216847901987214
Author(s):  
Haruka Nakada ◽  
Yusuke Inoue ◽  
Keiichiro Yamamoto ◽  
Kenji Matsui ◽  
Tsunakuni Ikka ◽  
...  
Keyword(s):  
Drug Development ◽  
Online Survey ◽  
Public Attitudes ◽  
Pharmaceutical Companies ◽  
Patient Records ◽  
The Public ◽  
Public Benefit ◽  
Secondary Use ◽  
New Drug ◽  
Opt Out

Objective: The objective of this study is to assess public attitudes toward pharmaceutical companies’ secondary uses of patient records and public preferences regarding consent approaches. Method: 3000 responses to an online survey were collected from adults in Japan. The questionnaire included 32 items related to (1) awareness of “clinical trials”; (2) awareness of the processes of drug development, such as cost, time, and the number of candidate substances in a new drug; (3) knowledge of the laws and regulations for use of patient records in Japan; (4) assessment of the public benefit of the secondary use of patient records; (5) preferences for consent for the secondary use of patient records; and (6) basic characteristics of the respondents. Results: The public benefit from secondary use of records by academic institutions for scientific research was rated highest. All of the activities by pharmaceutical companies were rated higher than those by governmental institutions and other for-profit companies. Regarding consent approaches, 37.9% preferred an “opt-in” approach for new drug development by pharmaceutical companies, 79.7% of whom would change their preference to an “opt-out” approach under specific conditions, such as ensuring intended uses only. Conclusion: Our respondents consider the “public benefit” as dependent on the relative distance from “promoting public health” when assessing the secondary purpose of patient record use. Pharmaceutical companies should include the beneficial purposes when using patient records with “opt-out” approach. Policy makers should pay more attention to the purposes of use when developing personal information protection policies.

scholarly journals “Opening a Can of Worms”: Public hopes and fears on healthcare data sharing. A qualitative study. (Preprint)

2020 ◽  
Author(s):  
Olivia Lounsbury ◽  
Lily Roberts ◽  
Jonathan R Goodman ◽  
Pip Batey ◽  
Lenny Naar ◽  
...  
Keyword(s):  
Data Sharing ◽  
Public Involvement ◽  
Healthcare Professionals ◽  
Local Level ◽  
Human Centered Design ◽  
Patient Centred Care ◽  
The Public ◽  
Healthcare Data ◽  
Qualitative Feedback ◽  
The Impact

BACKGROUND Evidence suggests that healthcare data sharing may strengthen care coordination, improve quality and safety, and reduce costs. However, in order to achieve efficient, meaningful adoption of healthcare data sharing initiatives, it is necessary to engage all stakeholders, from healthcare professionals to patients. Although previous work has assessed healthcare professionals’ perceptions of data sharing, the general public perspectives and particularly seldom heard groups, have yet to be fully assessed. OBJECTIVE This study aims to explore public views, particularly their hopes and concerns, around healthcare data sharing. METHODS An original, immersive public engagement interactive experience was developed - “The Can of Worms” installation - in which participants were prompted to reflect about data sharing through listening to individual stories around healthcare data sharing. A multidisciplinary team with expertise in research, public involvement and human-centered design developed the concept. The installation took place in three separate events, between Nov 2018 and Nov 2019. A combination of convenience and snowballing sampling was used. Participants were asked to fill self-administered feedback cards, and to describe their hopes and fears about the meaningful use of data in healthcare. The transcripts were compiled verbatim and systematically reviewed by four independent reviewers using the thematic analysis method to identify emerging themes. RESULTS Our approach exemplifies the potential of using interdisciplinary expertise in research, public involvement and human-centered design, to tell stories, collect perspectives, and spark conversation around complex topics in participatory digital medicine. A total of 352 qualitative feedback cards were collected, each reflecting participants’ ‘hopes’ and ‘fears’ for healthcare data sharing. Thematic analyses identified six themes under ‘hopes’: (1) enablement of personal access and ownership, (2) increased interoperability and collaboration, (3) generation of evidence for better and safer care, (4) improved timeliness and efficiency, (5) delivery of more personalised care, and (6) equality. The five main ‘fears’ identified included (1) inadequate security and exploitation, (2) data inaccuracy, (3) distrust , (4) discrimination and inequality, and (5) less patient-centred care. CONCLUSIONS This work sheds new light on the main hopes and fears from the public in what concerns healthcare data sharing. Importantly, our results highlight novel concerns from the public, in particular in what concerns the impact on health disparities, both at international and local level and on delivering patient-centred care. Incorporating the knowledge generated and focusing on co-designing solutions to tackle these concerns is critical to engage the public as active contributors and to fully leverage the potential of healthcare data use. CLINICALTRIAL Not applicable

scholarly journals Citizens, research ethics committee members and researchers’ attitude toward information and consent for the secondary use of health data: Implications for research within learning health systems

2021 ◽  
Author(s):  
Annabelle Cumyn ◽  
Roxanne Dault ◽  
Adrien Barton ◽  
Anne-Marie Cloutier ◽  
Jean-François Ethier
Keyword(s):  
Health System ◽  
Research Ethics ◽  
Data Use ◽  
Ethics Committee ◽  
Health Data ◽  
Research Ethics Committee ◽  
Secondary Use ◽  
Learning Health System ◽  
Public Perspectives ◽  
Advance Knowledge

A provincial survey was conducted to assess citizens, research ethics committee (REC) members and researchers’ attitude toward information and consent for the secondary use of health data for research within a learning health system (LHS). The results show that: 1) reuse of health data for research to advance knowledge and improve care is values by all parties; 2) consent regarding health data use for research is fundamental particularly to citizens, even when the data are de-identified; 3) a secure website to support the information and consent processes was appreciated by all. Researchers were more comfortable with the use of de-identified health data for research without informing nor seeking consent from people than citizen and REC member respondents. This survey was part of a larger project that aims at exploring public perspectives on alternate approaches to the current consent models in Quebec to take into consideration the unique features of LHS. The revised consent model will need to ensure that citizens are given the opportunity to be better informed about incoming researches with their health data and have their say, when possible, in the use of their data.

scholarly journals Analysis of Data Use Registers published by health data custodians in the UK

2021 ◽  
Author(s):  
Nada Karrar ◽  
Shahriar Kabir Khan ◽  
Sinduja Manohar ◽  
Paola Quattroni ◽  
David Seymour ◽  
...  
Keyword(s):  
Social Care ◽  
Data Use ◽  
Service Evaluation ◽  
Health Data ◽  
The Public ◽  
The United Kingdom ◽  
Health And Social Care ◽  
Public Record ◽  
The Uk ◽  
Research Alliance

Transparency of how health and social care data is used by researchers is crucial to building public trust. We define 'data use registers' as a public record of data an organisation has shared with other individuals or organisations for the purpose of research, innovation and service evaluation, and are used by some data custodians across the United Kingdom to increase transparency of data use. They typically contain information about the type of data being shared, the purpose, date of approval and name of organisation or individual using (or receiving) the data. However, information published lacks standardisation across organisations. Registers do not yet have a consistent approach and are often incomplete, updated infrequently and not accessible to the public. In this paper, we present an empirical analysis of existing data use registers in the UK and investigate accessibility, content, format and frequency of updates across health data organisations. This analysis will inform future recommendations for a data use register standard that will be published by the UK Health Data Research Alliance.

How to Draft Successful Memorandums of Understanding and Data-Sharing Agreements

2019 ◽  
pp. 191-204
Author(s):  
Matthew Penn ◽  
Rachel Hulkower
Keyword(s):  
Public Health ◽  
Health Care ◽  
Health System ◽  
Data Sharing ◽  
Data Use ◽  
Health Data ◽  
Critical Component ◽  
The Public ◽  
Goods And Services ◽  
Public Health Data

This chapter offers tips on crafting data-sharing agreements. Improving and increasing cross-sector collaboration in public health can be facilitated through the use of a memorandum of understanding (MOU). The chapter looks at the benefits of MOUs, and also drawbacks. It provides some case studies of successful MOUs. Cross-sector collaboration is an increasingly critical component of the public health system, the chapter concludes. Community partnerships can involve complex arrangements, with reciprocal promises to exchange goods and services, and MOUs can help organizations negotiate, organize, and maintain those relationships. For partnerships that need health care or public health data to function, a data use agreements (DUA) can provide a mechanism to define the data needed and the parameters around the intended release and use of the data.

scholarly journals Citizens, research ethics committee members and researchers’ attitude toward information and consent for the secondary use of health data: Implications for research within learning health systems

2021 ◽  
Author(s):  
Annabelle Cumyn ◽  
Roxanne Dault ◽  
Adrien Barton ◽  
Anne-Marie Cloutier ◽  
Jean-François Ethier
Keyword(s):  
Health System ◽  
Research Ethics ◽  
Data Use ◽  
Ethics Committee ◽  
Health Data ◽  
Research Ethics Committee ◽  
Secondary Use ◽  
Learning Health System ◽  
Public Perspectives ◽  
Advance Knowledge

A provincial survey was conducted to assess citizens, research ethics committee (REC) members and researchers’ attitude toward information and consent for the secondary use of health data for research within a learning health system (LHS). The results show that: 1) reuse of health data for research to advance knowledge and improve care is values by all parties; 2) consent regarding health data use for research is fundamental particularly to citizens, even when the data are de-identified; 3) a secure website to support the information and consent processes was appreciated by all. Researchers were more comfortable with the use of de-identified health data for research without informing nor seeking consent from people than citizen and REC member respondents. This survey was part of a larger project that aims at exploring public perspectives on alternate approaches to the current consent models in Quebec to take into consideration the unique features of LHS. The revised consent model will need to ensure that citizens are given the opportunity to be better informed about incoming researches with their health data and have their say, when possible, in the use of their data.

scholarly journals Investigating the Extent to Which Patients Should Control Access to Patient Records for Research: A Deliberative Process Using Citizens� Juries (Preprint)

2017 ◽  
Author(s):  
Mary P Tully ◽  
Kyle Bozentko ◽  
Sarah Clement ◽  
Amanda Hunn ◽  
Lamiece Hassan ◽  
...  
Keyword(s):  
Data Sharing ◽  
Health Data ◽  
Patient Records ◽  
Deliberative Process ◽  
Health Records ◽  
Public Benefit ◽  
Secondary Use ◽  
Use Of Data ◽  
Opt Out ◽  
Access To Data

BACKGROUND The secondary use of health data for research raises complex questions of privacy and governance. Such questions are ill-suited to opinion polling where citizens must choose quickly between multiple-choice answers based on little information. OBJECTIVE The aim of this project was to extend knowledge about what control informed citizens would seek over the use of health records for research after participating in a deliberative process using citizens’ juries. METHODS Two 3-day citizens’ juries, of 17 citizens each, were convened to reflect UK national demographics from 355 eligible applicants. Each jury addressed the mission “To what extent should patients control access to patient records for secondary use?” Jurors heard from and questioned 5 expert witnesses (chosen either to inform the jury, or to argue for and against the secondary use of data), interspersed with structured opportunities to deliberate among themselves, including discussion and role-play. Jurors voted on a series of questions associated with the jury mission, giving their rationale. Individual views were polled using questionnaires at the beginning and at end of the process. RESULTS At the end of the process, 33 out of 34 jurors voted in support of the secondary use of data for research, with 24 wanting individuals to be able to opt out, 6 favoring opt in, and 3 voting that all records should be available without any consent process. When considering who should get access to data, both juries had very similar rationales. Both thought that public benefit was a key justification for access. Jury 1 was more strongly supportive of sharing patient records for public benefit, whereas jury 2 was more cautious and sought to give patients more control. Many jurors changed their opinion about who should get access to health records: 17 people became more willing to support wider information sharing of health data for public benefit, whereas 2 moved toward more patient control over patient records. CONCLUSIONS The findings highlight that, when informed of both risks and opportunities associated with data sharing, citizens believe an individual’s right to privacy should not prevent research that can benefit the general public. The juries also concluded that patients should be notified of any such scheme and have the right to opt out if they so choose. Many jurors changed their minds about this complex policy question when they became more informed. Many, but not all, jurors became less skeptical about health data sharing, as they became better informed of its benefits and risks.

Big Voice or Big Data? The Difficult Birth of care.data

2015 ◽  
Vol 3 (1) ◽  
pp. 135-142
Author(s):  
Michael Soljak
Keyword(s):  
Data Protection ◽  
Public Awareness ◽  
Specific Patient ◽  
Healthcare Data ◽  
National Review ◽  
Patient Organisations ◽  
Opt Out ◽  
Patient Consent ◽  
The Uk ◽  
Data Collections

In the United Kingdom (UK), a range of historical national healthcare data collections have occurred, in some cases without a very specific legal basis apart from overarching international and European Union data protection commitments expressed in the UK Data Protection Act 1998. In 2012, the English Government announced that the GP Extraction Service (now care. data), a new central flow of patient-identifiable healthcare data from general practice computer systems, would commence to support healthcare commissioning. Data on the whole population would be extracted, and specific patient consent would not be sought. UK primary healthcare data is characterised by its richness, and comprises demographic, diagnostic, clinical, prescribing, test results and a range of other classes of data. In 2014 the English media and several non-governmental patient organisations began a campaign questioning the care. data initiative, and uncovered quite limited but nonetheless damaging evidence of improper release of patient data from historical data sources. A subsequent national review of information governance and a parliamentary inquiry has delayed care. data implementation, and a patient opt-out is being introduced. Another positive effect is the subsequently much higher public awareness of care.data.

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