In November, DPUK invited members of the public to join a Patient and Public Involvement (PPI) discussion group about a new clinical studies register that aims to recruit volunteers from cohort studies. Five members of the Alzheimer's Society PPI network – with experience of dementia and/or dementia research – joined our research team at the Medical Research Council in London. Our focus was to understand their views on the risks of dementia research, in particular giving consent, sharing data and taking part in clinical trials.
The group articulated clearly that data security (personal and health) and participating in testing new drugs were the main perceived barriers to those considering taking part in dementia studies. Building trust and offering volunteers choice and control were considered vital to our register’s success. When speaking about how to communicate to build trust, one contributor said “I think videos are good. Seeing someone actually speaking about it [the register], and also seeing that person as someone who is involved in this […] and that sort of builds a relationship”.
Thanks to our PPI discussion group we now have a stronger idea of how to convey to volunteers that they will always remain in control of their own study participation. Volunteers choose what tests, and studies, they want to support and can withdraw at any time. We also now know that we need to describe in greater detail how personal data will be stored, used and removed if requested. We believe that these improvements will lead to a better participant experience and motivate individuals to join the register which we will pilot in the New Year.
Though not compulsory, the value and importance of PPI in healthcare research is becoming increasingly acknowledged. As we found with our discussion group, engaging the public brings a fresh perspective to research ensuring that, as researchers, our assumptions about the public benefit and relevance of our projects are challenged. Armed with these insights into the public’s views on research priorities, study design and perceived public benefit, we can generate new research ideas that are more valuable, user-friendly and relevant.
We are delighted that members of our initial PPI discussion group kindly agreed to stay in touch and expect further opportunities for them to provide feedback on the development of the register.