Community views on the secondary use of general practice data: Findings from a mixed-methods study

Paper by Annette J. Braunack-Mayer et al: “General practice data, particularly when combined with hospital and other health service data through data linkage, are increasingly being used for quality assurance, evaluation, health service planning and research.Using general practice data is particularly important in countries where general practitioners (GPs) are the first and principal source of health care for most people.

Although there is broad public support for the secondary use of health data, there are good reasons to question whether this support extends to general practice settings. GP–patient relationships may be very personal and longstanding and the general practice health record can capture a large amount of information about patients. There is also the potential for multiple angles on patients’ lives: GPs often care for, or at least record information about, more than one generation of a family. These factors combine to amplify patients’ and GPs’ concerns about sharing patient data….

Adams et al. have developed a model of social licence, specifically in the context of sharing administrative data for health research, based on an analysis of the social licence literature and founded on two principal elements: trust and legitimacy.In this model, trust is founded on research enterprises being perceived as reliable and responsive, including in relation to privacy and security of information, and having regard to the community’s interests and well-being.

Transparency and accountability measures may be used to demonstrate trustworthiness and, as a consequence, to generate trust. Transparency involves a level of openness about the way data are handled and used as well as about the nature and outcomes of the research. Adams et al. note that lack of transparency can undermine trust. They also note that the quality of public engagement is important and that simply providing information is not sufficient. While this is one element of transparency, other elements such as accountability and collaboration are also part of the trusting, reflexive relationship necessary to establish and support social licence.

The second principal element, legitimacy, is founded on research enterprises conforming to the legal, cultural and social norms of society and, again, acting in the best interests of the community. In diverse communities with a range of views and interests, it is necessary to develop a broad consensus on what amounts to the common good through deliberative and collaborative processes.

Social licence cannot be assumed. It must be built through public discussion and engagement to avoid undermining the relationship of trust with health care providers and confidence in the confidentiality of health information…(More)”