Tazare John, Henderson Alasdair D, Morley Jessica, Blake Helen A, McDonald Helen I, Williamson Elizabeth J, Strongman Helen
Faculty of Epidemiology and Population Health, London School of Hygiene and Tropical Medicine, London, United Kingdom.
Oxford Internet Institute, University of Oxford, Oxford, United Kingdom.
BJGP Open. 2024 Oct 29;8(3). doi: 10.3399/BJGPO.2024.0020. Print 2024 Oct.
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.
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.
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.
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.
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.
英国国民健康服务（NHS）数据退出机制允许人们阻止其健康数据被用于直接护理以外的目的。2021年，随着政府主导的创建集中式假名初级保健记录数据库提案的提出，选择退出的人数有所增加。
描述2021年NHS全国数据退出机制对健康数据研究的潜在影响。
我们使用公开可用数据对退出情况进行了描述性分析，并讨论了对研究的潜在影响。
按年龄、性别和地区描述了英格兰退出情况的趋势。通过一项假设研究，我们探讨了退出机制在统计学和流行病学方面的影响。
在政府主导的关键退出登记截止日期之前（2021年5月31日至2021年6月30日），记录了1339862例全国数据退出；使英格兰退出人口的比例从2.77%增至4.97%。在女性中，退出比例增加了83%（从3.02%增至5.53%），而男性增加了76%（从2.51%增至4.41%）。在各年龄组中，40至49岁人群的相对增幅最高，从2.89%升至6.04%。显著的地理差异与贫困状况没有明显关联。退出机制对研究的关键影响包括样本量减少以及健康事件发生频率或这些事件之间关联的观察指标出现不可预测的偏差。
退出率因年龄、性别和地点而异。这一点以及其他特征的差异对研究的影响无法量化。在制定未来的退出解决方案时，必须考虑退出机制对研究的潜在影响以及基于此项研究的健康政策后果。
