Centre for Epidemiology Versus Arthritis, University of Manchester, Manchester, United Kingdom.
NIHR School for Primary Care Research, University of Manchester, Manchester, United Kingdom.
J Med Internet Res. 2024 Oct 15;26:e53024. doi: 10.2196/53024.
Although many people are supportive of their deidentified health care data being used for research, concerns about privacy, safety, and security of health care data remain. There is low awareness about how data are used for research and related governance. Transparency about how health data are used for research is crucial for building public trust. One proposed solution is to ensure that affected communities are notified, particularly marginalized communities where there has previously been a lack of engagement and mistrust.
This study aims to explore patient and public perspectives on the use of deidentified data from electronic health records for musculoskeletal research and to explore ways to build and sustain public trust in health data sharing for a research program (known as "the Data Jigsaw") piloting new ways of using and analyzing electronic health data. Views and perspectives about how best to engage with local communities informed the development of a public notification campaign about the research.
Qualitative methods data were generated from 20 semistructured interviews and 8 focus groups, comprising 48 participants in total with musculoskeletal conditions or symptoms, including 3 carers. A presentation about the use of health data for research and examples from the specific research projects within the program were used to trigger discussion. We worked in partnership with a patient and public involvement group throughout the research and cofacilitated wider community engagement.
Respondents were supportive of their health care data being shared for research purposes, but there was low awareness about how electronic health records are used for research. Security and governance concerns about data sharing were noted, including collaborations with external companies and accessing social care records. Project examples from the Data Jigsaw program were viewed positively after respondents knew more about how their data were being used to improve patient care. A range of different methods to build and sustain trust were deemed necessary by participants. Information was requested about: data management; individuals with access to the data (including any collaboration with external companies); the National Health Service's national data opt-out; and research outcomes. It was considered important to enable in-person dialogue with affected communities in addition to other forms of information.
The findings have emphasized the need for transparency and awareness about health data sharing for research, and the value of tailoring this to reflect current and local research where residents might feel more invested in the focus of research and the use of local records. Thus, the provision for targeted information within affected communities with accessible messages and community-based dialogue could help to build and sustain public trust. These findings can also be extrapolated to other conditions beyond musculoskeletal conditions, making the findings relevant to a much wider community.
尽管许多人支持将其去识别化的医疗保健数据用于研究，但人们对医疗保健数据的隐私、安全和保障仍存在担忧。人们对数据如何用于研究以及相关治理措施的认识程度较低。透明度对于建立公众信任至关重要。一种解决方案是确保通知受影响的社区，特别是那些以前缺乏参与和信任的边缘化社区。
本研究旨在探讨患者和公众对使用电子健康记录中的去识别数据进行肌肉骨骼研究的看法，并探索建立和维持公众对健康数据共享的信任的方法，该研究计划（称为“数据拼图”）试点新的使用和分析电子健康数据的方法。关于如何最好地与当地社区接触的意见和观点为研究的公众通知活动提供了信息。
定性方法数据来自 20 次半结构化访谈和 8 次焦点小组，共 48 名参与者患有肌肉骨骼疾病或症状，包括 3 名护理人员。使用关于使用健康数据进行研究的演示文稿和该计划内特定研究项目的示例来引发讨论。我们与一个患者和公众参与小组合作，在整个研究过程中共同促进更广泛的社区参与。
受访者支持将其医疗保健数据用于研究目的，但对电子健康记录如何用于研究的认识程度较低。数据共享的安全性和治理问题引起了关注，包括与外部公司的合作和访问社会保健记录。在了解更多关于如何利用他们的数据来改善患者护理后，受访者对“数据拼图”计划中的项目示例持积极态度。参与者认为需要采取一系列不同的方法来建立和维持信任。他们要求提供以下信息：数据管理；有权访问数据的个人（包括与外部公司的任何合作）；国家卫生服务局的国家数据选择退出；以及研究结果。除了其他形式的信息外，与受影响的社区进行面对面的对话被认为很重要。
研究结果强调了对健康数据共享用于研究的透明度和认识的必要性，以及根据当前和当地研究情况进行调整的重要性，因为居民可能会对研究重点和使用当地记录更感兴趣。因此，在受影响的社区内提供针对特定人群的信息，并提供易于获取的信息和基于社区的对话，可以帮助建立和维持公众信任。这些发现也可以推广到肌肉骨骼疾病以外的其他疾病，使发现更适用于更广泛的社区。
