ArticleThe British journal of general practice : the journal of the Royal College of General Practitioners2005
Sharing patient data: competing demands of privacy, trust and research in primary care.
Article in The British journal of general practice : the journal of the Royal College of General Practitioners, 2005. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 30 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
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Who cites it
30 citing papers in PubMed.
- Attitudes of Longitudinal Study Participants and Members of the Public Towards Data Sharing for Secondary Research: A Survey Based Approach.Journal of empirical research on human research ethics : JERHRE · 2026Article
- Unlocking insights: general practice staff perspectives on sharing general practice data for research - a scoping review.BMC primary care · 2025Article
- Community Comfort With Automatic Sharing of Race, Ethnicity, and Language Data Between Health Care Settings: Cross-Sectional Study.Interactive journal of medical research · 2025Article
- Sharing data matters: exploring the attitudes of older consumers on an emerging healthy ageing data platform using electronic health records for research.BMJ health & care informatics · 2025Article
- Placing conditions on sharing general practice data for research: Recommendations from two community juries.International journal of population data science · 2025Article
- Distributed management of patient data-sharing informed consents for clinical research.Computers in biology and medicine · 2024Article
- Community views on the secondary use of general practice data: Findings from a mixed-methods study.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- Advancements in Biotechnology and Stem Cell Therapies for Breast Cancer Patients.Current stem cell research & therapy · 2024Review
- Article
- Exploring patient perspectives on the secondary use of their personal health information: an interview study.BMC medical informatics and decision making · 2023Article
- Identifying primary care datasets and perspectives on their secondary use: a survey of Australian data users and custodians.BMC medical informatics and decision making · 2022Article
- Public Attitudes to Digital Health Research Repositories: Cross-sectional International Survey.Journal of medical Internet research · 2021Article
- Exploring public concerns for sharing and governance of personal health information: a focus group study.JAMIA open · 2021Article
- Attitudes towards using electronic health records of patients with psoriasis and dermatologists: a cross-sectional study.BMC medical informatics and decision making · 2020Article
- How should electronic health records be designed? A cross-sectional study in patients with psoriasis.BMC medical informatics and decision making · 2019Article
- A review of attitudes towards the reuse of health data among people in the European Union: The primacy of purpose and the common good.Health policy (Amsterdam, Netherlands) · 2019Review
- Stakeholders' views on data sharing in multicenter studies.Journal of comparative effectiveness research · 2017Article
- Public preferences for electronic health data storage, access, and sharing - evidence from a pan-European survey.Journal of the American Medical Informatics Association : JAMIA · 2016Article
- The social licence for research: why care.data ran into trouble.Journal of medical ethics · 2015Article
- The use of electronic patient records for medical research: conflicts and contradictions.BMC health services research · 2015Article
Corrections and comments
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Authors and funding
4 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundPatient privacy may conflict with the advancement of knowledge through data sharing. The data contained in primary care records are uniquely comprehensive.
aimTo explore the knowledge and attitudes of patients and members of the primary healthcare team regarding the sharing of data held in primary care records, with particular reference to data sharing for research and the impact that this may have on trust between patients and health professionals. DESIGN OF STUDY: Qualitative study using quota sampled, semi-structured interviews.
settingFive general practices in Leicestershire, UK.
methodGrounded theory and framework methodology were used. Interviews were transcribed and analysed thematically.
resultsTwenty patients and 15 healthcare professionals and managers were interviewed. Patients had limited knowledge of the type of information held in their general practice records and the ways in which these data are shared, but appeared ready to form preliminary views on issues such as data sharing for audit and disease registration. In this climate of limited awareness, there was no suggestion that concern about data sharing for research adversely affects patient trust or leads patients to withhold relevant information from health professionals in primary care. Interviews carried out with staff suggested a lack of clear practice policies regarding data sharing.
conclusionsGeneral practices may need to develop policies on data sharing, bring these to the attention of their patient population and improve patient awareness about the nature of the data contained in their records. Researchers should ensure that patients are adequately informed about the nature of data contained in patient records when seeking consent for data extraction.
Indexed as
Identifiers
16212854PMC1562354What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.