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.

scholarly journals Health data on public trial: To what extent should patients control access to patient records?

2017 ◽  
Vol 1 (1) ◽  
Author(s):  
Malcolm Oswald ◽  
Ruth Norris ◽  
Lamiece Hassan ◽  
Niels Peek ◽  
Mary Tully
Keyword(s):  
Health Data ◽  
Expert Witnesses ◽  
Patient Records ◽  
Deliberative Process ◽  
Public And Private ◽  
Public Benefit ◽  
Policy Problem ◽  
Secondary Use ◽  
Use Of Data ◽  
Access To Data

ABSTRACT ObjectivesThe secondary use of health data for public and private good raises complex questions of privacy and governance. Such questions are ill-suited to opinion polling where citizens must choose quickly with little information between multiple choice answers. This project aims to extend our knowledge about what control informed citizens would seek over health records after participating in a deliberative process. ApproachTwo citizens’ juries, of 17 citizens each, were convened; each jury was chosen to reflect national demographics, from a pool of almost 400 volunteers. Juries met separately over three days, to address the charge “To what extent should patients control access to patient records for secondary use?” Citizens heard from and questioned five expert witnesses (chosen either to inform the jury, or to air arguments for and against the secondary use of data), interspersed with opportunities to deliberate amongst themselves, using a range of tools including facilitated discussion and guided role-play. Jurors voted on a series of questions associated with the jury charge, giving their rationale. Individual views were polled at the beginning and end of the process against the jury charge. ResultsThirty-three out of 34 jurors voted in support of the secondary use of data, with 24 wanting individuals to be able to opt-out and 6 favouring opt-in. Many jurors changed their opinion about who should get access to these records, with more people supporting wider information sharing by the end of day 3. When considering who should get access to data, the two 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, whilst jury 2 was more cautious and sought to give patients more control. The questionnaire results suggest that over the course of three days a few people moved towards more patient control over patient records, but overall more people moved towards enabling greater sharing of health data for public benefit. Despite our endeavours to ensure otherwise, bias was reported by a few jurors, particularly regarding the impartiality of information from expert witnesses. ConclusionThese findings illustrate that citizens often change their minds about complex policy questions when they become more informed about a public policy problem. It may also suggest that many, but not all, people become less sceptical about health data sharing as they become better informed of its benefits and risks.

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 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.

The process of sourcing and preparing electronic health records data to implement a machine-learning algorithm for early identification of maternal cardiovascular risk (Preprint)

2021 ◽  
Author(s):  
Nawar Shara ◽  
Kelley M. Anderson ◽  
Noor Falah ◽  
Maryam F. Ahmad ◽  
Darya Tavazoei ◽  
...  
Keyword(s):  
Machine Learning ◽  
Cardiovascular Risk ◽  
Electronic Health Records ◽  
Patient Care ◽  
Early Identification ◽  
Health Data ◽  
Patient Specific ◽  
Patient Records ◽  
Health Records ◽  
Electronic Health

BACKGROUND Healthcare data are fragmenting as patients seek care from diverse sources. Consequently, patient care is negatively impacted by disparate health records. Machine learning (ML) offers a disruptive force in its ability to inform and improve patient care and outcomes [6]. However, the differences that exist in each individual’s health records, combined with the lack of health-data standards, in addition to systemic issues that render the data unreliable and that fail to create a single view of each patient, create challenges for ML. While these problems exist throughout healthcare, they are especially prevalent within maternal health, and exacerbate the maternal morbidity and mortality (MMM) crisis in the United States. OBJECTIVE Maternal patient records were extracted from the electronic health records (EHRs) of a large tertiary healthcare system and made into patient-specific, complete datasets through a systematic method so that a machine-learning-based (ML-based) risk-assessment algorithm could effectively identify maternal cardiovascular risk prior to evidence of diagnosis or intervention within the patient’s record. METHODS We outline the effort that was required to define the specifications of the computational systems, the dataset, and access to relevant systems, while ensuring data security, privacy laws, and policies were met. Data acquisition included the concatenation, anonymization, and normalization of health data across multiple EHRs in preparation for its use by a proprietary risk-stratification algorithm designed to establish patient-specific baselines to identify and establish cardiovascular risk based on deviations from the patient’s baselines to inform early interventions. RESULTS Patient records can be made actionable for the goal of effectively employing machine learning (ML), specifically to identify cardiovascular risk in pregnant patients. CONCLUSIONS Upon acquiring data, including the concatenation, anonymization, and normalization of said data across multiple EHRs, the use of a machine-learning-based (ML-based) tool can provide early identification of cardiovascular risk in pregnant patients. CLINICALTRIAL N/A

Governing Commercial Access to Health Data for Public Benefit: Charity Law Solutions

2019 ◽  
Vol 28 (2) ◽  
pp. 247-269
Author(s):  
Jessica L Bell
Keyword(s):  
Health Data ◽  
Independent Data ◽  
Significant Extent ◽  
Data Governance ◽  
The Public ◽  
Public Benefit ◽  
Company Limited ◽  
Access To Health ◽  
Charity Commission ◽  
Access To Data

Abstract There is a growing body of evidence that supports the view that research participants and the public are concerned about commercial access to health data. Evidence also suggests that attitudes are ameliorated when charity organisations are involved and where research promises to deliver ‘public benefit’. To a significant extent, therefore, mechanisms that ensure the public benefit are key to sustaining public and participant support for research access to health data. As a regime founded on the concept of public benefit, charity law provides regulatory and governance mechanisms through which the public benefit of a charity is protected and promoted. This article examines the merits of charity law mechanisms and analyses their significance for governance of commercial access to health data for public benefit, using UK Biobank Ltd, a charitable company limited by guarantee, as an example. The article critically analyses three charity law mechanisms that operate to ensure that an organization providing access to data meets its public benefit requirements: charitable purposes; members’ and directors’ powers and duties; and accountability via the oversight powers of the Charity Commission and charity proceedings in court. The article concludes that there is potential for the charity model to be the benchmark for governing commercial access to health data for public benefit research, but notes the limitations of the model and recommends the appointment of independent data governance committees to further bolster the charity law framework.

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 National data opt out programme: consequences for maternity services in England

2020 ◽  
Vol 5 (1) ◽  
Author(s):  
Kate Marie Lewis ◽  
Pia Hardelid
Keyword(s):  
Care Service ◽  
Population Level ◽  
Health Data ◽  
Service Improvement ◽  
National Data ◽  
Health Records ◽  
Opting Out ◽  
Individual Care ◽  
Opt Out ◽  
English Population

Electronic health records offer great potential for individual care, service improvement and, when collated, the health of the wider population. Datasets composed of these types of records have been invaluable to our understanding of risk factors for maternal and infant ill-health. However, a potential barrier to data quality in England is emerging where patients choose to opt out of sharing their information beyond the NHS. Focussing on maternity statistics, we will present the importance of population level health data for monitoring NHS services, and the potential consequences for patients of opting out. Evidencing the success of similar systems in Nordic countries, we argue that the English population must be better informed of the implications of opting out of sharing NHS data for research and the safeguards in place to protect patient information.

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 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.

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