Use of electronic patient records for research: views of patients and staff in general practice

Background: Electronic patient records offer unique opportunities to undertake population-based research. The Health Research Support Service (HRSS) pilot project sought to extract electronic records on a national basis from across health and social care and transfer them together with identifiers to a designated 'safe haven'.

Objective: To determine the feasibility and acceptability of the HRSS pilot in primary care.

Methods: Interviews and focus groups with patients and practice staff.

Results: There was general support from both patients and staff for the principle of the HRSS. The 'opt-out' basis for participation in the HRSS drew mixed responses from patients and staff, with an appreciation of the advantages in relation to participation by default, but concerns about the extent to which this constituted true consent. Concerns were expressed about confidentiality and the safety and security of the extracted data. The patient information pack was roundly criticized by both patients and staff. Trust in individual GPs, practices and the National Health Service (NHS) was a crucial factor in patients' decisions about participation.

Conclusions: Although patients and staff were generally supportive of the HRSS, they require clear information about the proposed use of medical records for research purposes. The question of 'opt out' versus 'opt in' remains controversial and further consideration will be needed if research using routine medical records is to achieve its full potential as a 'core' activity in the NHS.