Consumer attitudes, barriers and facilitators to sharing clinical data for research purposes: Results from a focus group synthesis

Current research into the digital healthcare landscape reveals a significant gap in understanding the perspectives of consumers with lived health experiences on sharing their health data for research purposes. Despite the substantial value that such shared information can bring to healthcare research, policy development, and system improvement, insights into the attitudes and willingness of these consumers towards data sharing remain sparse. This study seeks to fill this gap, exploring the unique views of these individuals and assessing the potential benefits their data sharing could contribute to healthcare. Utilising three focus groups, this qualitative study engaged 25 consumers with chronic health conditions to explore their attitudes towards sharing their personal health data for research. Conducted in Western Australia, the sessions were adapted to online and face-to-face settings due to COVID-19 restrictions. Discussions were recorded, transcribed and analysed using a reflexive thematic approach to capture the diverse perspectives and experiences of the participants. The study revealed critical insights into how consumers with lived health experiences perceive the sharing of their health data for research. Key themes identified included data management and privacy concerns, the importance of transparent and patient-centric data governance models, and the varying levels of consumer trust in healthcare data-sharing processes. This research provides valuable contributions towards developing a more inclusive and effective framework for health data sharing in research. By understanding the unique perspectives of consumers with lived health experiences, the study provides an understanding of enhancing consumer trust and participation in data-sharing initiatives. These insights are crucial for improving the quality and relevance of healthcare delivery, research, and policy-making, ultimately benefiting the broader healthcare sector.