JMIR Publications

ABSTRACT

Background:

Although many people are supportive of their de-identified healthcare data being used for research, concerns about privacy, safety and security of health data remain. There is low awareness about how data is used for research and related governance. Transparency about how health data is used for research is crucial for building public trust. One proposed solution is to ensure affected communities are notified, particularly marginalized communities where there has previously been lack of engagement and mistrust following historical malpractice of research conducted on those communities.

Objective:

To explore patient and public perspectives on the use of de-identified 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 programme (known as ‘The Data Jigsaw’) piloting new ways of using and analysing 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.

Methods:

Qualitative methods generated data from 20 semi-structured interviews and eight focus groups, comprising 48 participants, including 3 carers, with musculoskeletal conditions or symptoms. A presentation about use of health data for research and examples from the specific research projects within the programme was used to trigger discussion. We worked in partnership with a patient and public involvement group throughout the research and to co-facilitate wider community engagement.

Results:

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 programme were viewed positively after respondents knew more about how their data was being used to improve patient care. A range of different methods to build and sustain trust were requested. Information about data management, who has access to data (including any collaboration with external companies), the NHS national data opt-out and research outcomes was requested. It was considered important to enable in-person dialogue with affected communities in addition to other forms of information.

Conclusions:

The findings have emphasised 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, targeted information provision within affected communities with accessible messages and provision for 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.