Table 3.

Researchers’ perspectives on impact of involvement

Themes	Item
Limited experiences of PPI	Of the 13 researchers interviewed, 10 had no previous experience of systematically obtaining patient and public input to planning or conduct of research:
	‘So it was the first time we've heard about it, on this project. So it took us all a while to understand it, but I mean by going through it and by doing it we understood the importance of it’. (Nicosia, R3)
Acceptance and importance of PPI	There was general acceptance of PPI by researchers and acknowledgement of the importance of the PPI integrated into the research programme. Researchers reported that PPI provided them with the perspective of living with dementia:
	‘I think it’s very useful and I think it gives a perspective to research that we needed to have, because we kind of tend to, you know, sort of take the feeling out of our day to day research and when you have the actual patients explain to them rather than peers, it does give us a different perspective’ (Manchester, PM9)
Beneficial impacts of involvement	Researchers talked about the beneficial impacts of PPI, including refining content and wording of public-facing information and identifying issues not considered by the researchers. One researcher commented that PPI provided insight into what patients and the public think of their work. Researchers valued PPI with respect to understanding the impacts of dementia on daily life and how these impacts should be captured in health economic measurement, ensuring the appropriateness and relevance of health economic measures:
	‘We were trying to confirm that using dependence as some measure of progression in our economic model would be appropriate and having spoken to the RUG members, they, kind of, confirmed that. And then there were some, kind of, hallmark things that stood out that they all, kind of, agreed on in their discussions … It has helped in terms of model of validation’. (Man, R12)
	Some researchers also talked about the emotional impact of listening to RUG members’ experiences, which were distressing at times, particularly for researchers not used to patient contact. Researchers reported that their interaction with RUG members led to researchers changing future practice, such as taking patient perspectives into account in planning and prioritising research:
	‘I’ve written numerous grant proposals since SENSE-Cog began, and in some of them I’ve included … wherever it makes sense, I’ve included a research utilisation for a patient and public involvement group’. (Nicosia, PM8)
Challenges	Researchers talked about challenges, such as PPI suggestions not being able to be implemented because of scientific reasons or resource limitations. Another researcher highlighted the importance of identifying points of research design where PPI would have a critical impact and reported a missed opportunity concerning selection of outcome measures for an intervention study due to time constraints in development of the study protocol.

PPI, patient and public involvement; RUG, Research User Group.