Researchers' experiences of patient & public involvement

Organisational support and leadership for patient and public involvement

We asked researchers what organisational support they found helpful or would have liked with involvement. One of the most common responses to this was the importance of funding for involvement beyond specific grants (see also ‘Payment, expenses and funding issues in patient and public involvement’). Help with PPI costs from the NIHR (National Institute for Health Research) Research Design Services (RDS) to work up a new grant application was very welcome, although some commented that the amounts available can be quite small, and applications to other funders do not have this support. But there was a wider feeling that involvement needed to progress beyond a short term focus on each study, and that universities should invest more in core infrastructure, including both dedicated staff time as well as guidance and training. Alongside this was a worry that involvement is often left to more junior (and mostly female) researchers on short-term contracts, resulting in a loss of momentum and continuity when the contract and the study end. However, Ann pointed out that even with senior commitment and leadership it can be hard.
Those who worked in departments which invested in infrastructure for involvement felt fortunate, and praised the support from specialist PPI coordinators who could offer support and guidance; focus on building longer term relationships with patients and members of the public; and provide expert facilitation. As well as practical help, specialist PPI staff could give researchers moral support and encouragement; as Hayley pointed out, “It can be quite daunting for researchers.” Some of the people in our sample held a PPI co-ordinator role and described what they could bring, and how they could bridge between the academic world and lay people.
However, it was evident from researchers’ accounts that people designated as PPI leads or coordinators could have very different roles and levels of seniority. Seniority and experience could be helpful in working with often very senior clinical and research colleagues, playing advocacy and strategic roles, and encouraging good involvement practice, including critical reflection on the practice and purpose of PPI. But the type of support most valued by researchers tended to be practical and hands-on, helping recruit people to involve, arranging and facilitating meetings, resolving payment issues and so on.

Several researchers also valued their local administration teams for help organising meetings (including all the mechanics of organising rooms, catering, parking and reimbursements) and keeping in touch with the people involved. Those without such good support – provided either within a PPI role or at times by those with a more administrative role - were left having to cope with the burden of admin on their own, and questioned whether this was good use of their time.
At a broader level, researchers described the importance of a generally supportive culture, strong senior leadership and role models, and principal investigator commitment. While there were concerns that in some cases universities were still paying lip service to the idea of involvement, some suggested there were signs that senior university staff were beginning to understand the real benefits. However, career incentives for researchers are not always well aligned with PPI.
Finally, researchers commented on the leadership role of funders and other national bodies, in particular the role of the National Institute for Health Research (NIHR) in creating momentum and pressure. This was both through its funding streams, requiring applicants to think carefully about PPI, and through the advice and support of NIHR INVOLVE and the local Research Design Services. (In Wales, Involving people has played a similar role to NIHR INVOLVE). There was still felt to be a certain amount of duplication and reinvention taking place, and a need for a firmer national steer on some issues, but nonetheless agreement that there has been substantial change over recent years. The NIHR’s recent strategic review (‘Going the Extra mile’) addresses some of these issues, recognising the need for a whole-system change and approach.  Greater awareness-raising about what organisational support is available for researchers who are new to involvement would also be useful.
Researchers recommended not only accessing the range of guidance and support available from NIHR INVOLVE but also attending INVOLVE’s biennial conference as a way of learning directly from others’ experience and creating more sense of a community of practice amongst those working in this field. As Valerie said, ‘What's great about the PPI conference and INVOLVE is that you can all learn from everybody else's “learnings on the job”.’


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