Meaningful patient and public involvement/engagement (PPI/E) in research helps to make research more acceptable, more relevant, more transparent and more likely to be useful in the real world. Our aim is to improve the healthcare of people living with mental health conditions using health data. It is vital to work together with patients and members of the public to make DATAMIND a transparent, safe, trustworthy, and useful resource for researchers. We want patients and the public to have a direct voice in the running and direction of DATAMIND as a whole, as well as involvement in all its activities and themes.
Patients and the public will continue to steer the work and direction of DATAMIND. This is with both the RAG (and their communities) and other PPI/Public groups that members of DATAMIND are working with.
- Work is ongoing exploring best-practice guidelines for commercial/industrial access to mental health data for research. Training sessions, further workshops with industry and a public workshop are being planned.
- Ongoing work with an industry partner work to develop their patient/public involvement plans and privacy/data-sharing documents.
- Work continues to develop additional “data literacy” resources for patients and the public, around the topic of mental health data.
- One member of the RAG has asked for the RAG to be more fully integrated into the whole of DATAMIND including grant funding, questions asked, strategy, and feedback. Current practices are being reviewed.
- Multiple ideas for the DATAMIND website have been collated and are now being worked on. These have been divided into short-, mid- and long-term projects.
- Members of the RAG are working with MQ to hold a patient panel at the next MQ Data Science meeting leading to further work to develop training for early career researchers around PPI.
- The RAG and other PPI groups are extending their work across the full range of DATAMIND projects and activities with meetings already in set up working with the Road Builders “Linking physical and mental health in severe mental illness” and “Widening availability of mental health care text analytics capabilities”.