Sharing patient data: competing demands of privacy, trust and research in primary care

Abstract

Background: Patient privacy may conflict with the advancement of knowledge through data sharing. The data contained in primary care records are uniquely comprehensive.

Aim: To 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.

Setting: Five general practices in Leicestershire, UK.

Method: Grounded theory and framework methodology were used. Interviews were transcribed and analysed thematically.

Results: Twenty 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.

Conclusions: General 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.