Patients' views about the use of their personal information from general practice medical records in health research: a qualitative study in Ireland

Abstract

Background: National policies are being developed, which may limit access to patients' records for health research. This could reduce the ability of health research to benefit society as a whole. It is important to develop an in-depth understanding of people's views across demographic groups to inform such policy development. Aims. To explore patients' views about the use of their general practice records in health research with attention to gender and age. Design of study. Qualitative study using focus groups.

Setting: Six General Practices in the west of Ireland.

Method: Focus Group interviews with 35 people who were patients at the practices.

Results: Overall, participants were positively inclined towards the idea of information from their records (anonymous and identifiable) being used in research for the 'greater good' although there were some concerns about personal information being 'leaked'. Males emphasized risks in relation to employment and finances, whereas females emphasized risks in relation to social discomfort and embarrassment. Participants were supportive of consent models that enable patients to give prior ongoing consent for specific agreed 'levels' of data use, affording patients self-determination without the need for consent request on study-by-study basis.

Conclusion: Overall male and female patients of different ages are supportive of the use of their general practice records in health research and of general practitioners as data protectors.