| Autor: |
John Tazare, Alasdair D Henderson, Jessica Morley, Helen A Blake, Helen I McDonald, Elizabeth J Williamson, Helen Strongman |
| Jazyk: |
angličtina |
| Rok vydání: |
2024 |
| Předmět: |
|
| Zdroj: |
BJGP Open, Vol 8, Iss 3 (2024) |
| Druh dokumentu: |
article |
| ISSN: |
2398-3795 |
| DOI: |
10.3399/BJGPO.2024.0020 |
| Popis: |
Background: The English NHS data opt-out allows people to prevent use of their health data for purposes other than direct care. In 2021, the number of opt-outs increased in response to government-led proposals to create a centralised pseudonymised primary care record database. Aim: To describe the potential impact of NHS national data opt-outs in 2021 on health data research. Design & setting: We conducted a descriptive analysis of opt-outs using publicly available data and the potential consequences on research are discussed. Method: Trends in opt-outs in England were described by age, sex, and region. Using a hypothetical study, we explored statistical and epidemiological implications of opt-outs. Results: During the lead up to a key government-led deadline for registering opt-outs (from 31 May 2021–30 June 2021), 1 339 862 national data opt-outs were recorded; increasing the percentage of opt-outs in England from 2.77% to 4.97% of the population. Among females, percentage opt-outs increased by 83% (from 3.02% to 5.53%) compared with 76% in males (from 2.51% to 4.41%). Across age groups, the highest relative increase was among people aged 40–49 years, which rose from 2.89% to 6.04%. Considerable geographical variation was not clearly related to deprivation. Key research consequences of opt-outs include reductions in sample size and unpredictable distortion of observed measures of the frequency of health events or associations between these events. Conclusion: Opt-out rates varied by age, sex, and place. The impact of this and variation by other characteristics on research is not quantifiable. Potential effects of opt-outs on research and consequences for health policies based on this research must be considered when creating future opt-out solutions. |
| Databáze: |
Directory of Open Access Journals |
| Externí odkaz: |
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