BACKGROUND Background: Harnessing the power of big data has unexplored potential in the field of dementia and brain health research. However, as interest in big data increases it is important to learn what the public understands about the use of their routinely collected healthcare data for research purposes, and their attitudes to such use. Participants’ data is increasingly collected in studies with open-data access processes in place, and through informed consent processes, participants show their willingness to share their data in this way. There remains an inherent flaw in research studies whereby the participants may not reflect the population at large representing a sampling bias. Access to medical records allows research studies to include a wholly representative sample. OBJECTIVE This study aimed to explore attitudes held by members of the public on the use of their healthcare data for dementia research purposes. METHODS Methods: Data was collected in a series of focus groups with semi-structured discussions. Transcripts from the focus groups were analysed using thematic analysis. RESULTS Results: Participants reported a willingness for their anonymised healthcare data to be accessed and used for research purposes, with some caveats for identifiable or highly sensitive data. Participants were happier for trusted organisations, such as the UK’s National Health Service and universities, to access their data compared to pharmaceutical companies. Clear and transparent communication about both the use of healthcare data in research studies and about study results was highlighted as important to participants. There was general misunderstanding about what healthcare data included and how researchers use healthcare data. CONCLUSIONS Conclusions: Overall, our findings underline the importance of clear communication to build trust and understand in the public about how their healthcare data can be used to support high quality dementia and brain health focussed data research. CLINICALTRIAL NA
