Beyond primary use: Establishing a social license for sharing general practice data for research.

Beyond primary use: Establishing a social license for sharing general practice data for research.

Annette Braunack-Mayer¹, Heidi Green¹, Justin Beilby², Carolyn Adams³, Felicity Flack⁴, Anthony Brown⁵, Belinda Fabrianesi¹, Lucy Carolan¹, Kate Miller⁴, Alberto Nettel -Aguirre⁶, Australian Centre for Health Engagement, Evidence and Values (ACHEEV), School of Health and Society, University Of Wollongong Wollongong², Adelaide SA³, NSW Australia^Crawley, Australia 5^NSW, 6 Centre for Health and Social Analytics, University of Wollongong^Australia,

¹Australian Centre for Health Engagement, Evidence and Values (ACHEEV), School of Health and Society, University Of Wollongong, Wollongong, NSW, Australia
²Torrens University, Adelaide , SA, Australia
³Macquarie University, North Ryde, NSW, Australia
⁴Population Health Research Network, Crawley, WA, Australia
⁵Health Consumers NSW, Sydney, NSW, Australia
⁶Centre for Health and Social Analytics, University of Wollongong, Wollongong, NSW, Australia

Abstract

Background:
The information in general practice medical records is increasingly being used for purposes outside of clinical care, including for research. Whilst there is broad support for research using administrative health data, patients and the public are more apprehensive about the use of general practice data, particularly with respect to ethical concerns about confidentiality, privacy, consent and data security. We need to ensure that these concerns are addressed before the use of general practice data for research becomes widespread.
Methods:
We held two community juries in July and August 2023, each with 20 jurors. Each jury considered the charge ‘Under what circumstances, if any, should we share general practice data for research purposes?’. The jurors were provided with information by expert witnesses with the opportunity to question experts, interspersed with structured deliberation supported by guiding questions.
Results:
In principle, there was broad support to share general practice data for research, but only under specific conditions. The jurors made recommendations about conditions related to consent, communication, governance and oversight, data security, costs, and penalties for misusing data.
Conclusion:
Community juries are an effective way to assess the conditions under which controversial topics, such as using patients’ general practice information, can be ethically, legally and socially acceptable. Establishing a social license for sharing general practice data will require careful attention to patient and public understanding of data sharing practices, including focusing on greater transparency and better information provision, which will contribute to the maintenance of trust in general practice and general practitioners.

Biography

Professor Braunack-Mayer’s research, teaching and community service combines rigorous and robust social and ethical analyses of health systems, policies and practices with the views and experiences of community members. Annette is passionate about ensuring that the experiences and views of members of communities contribute to health services, policies and systems. She has brought this commitment to bear in every research, teaching and service activity in which she engages, leading to strong relationships and a familiarity with needs across diverse communities and service providers.