Learning and adapting to make PPIE work better in non-clinical research

In a post based on a recent talk, Siân Harris shares some of what we have learned from the first four years of involving a patient advisory group in non-clinical cancer research in the Integrative Cancer Epidemiology Programme.

Recently, I was invited to speak as part of a “PPIE Showcase” – an event that shared some of the wealth of activities in patient public involvement and engagement (PPIE) going on across our University and city. The event was held in a packed Trinity Arts Centre in Old Market, Bristol with an audience of both university staff and public contributors in a range of research areas.

I spoke about the journey that we are on in involving members of the public in the Integrative Cancer Epidemiology Programme (ICEP). My presentation, which is shared in this blog post, was prepared in consultation with our PPIE group.

ICEP uses cutting-edge statistical methods and genetic data to generate insight into preventing, detecting early and treating cancers, as well targeting prevention and treatments to those most at risk. When the latest phase of this Cancer Research UK-funded programme began in 2020 it included a patient and public involvement and engagement (PPIE) component.

PPIE is a common feature of clinical research. However, it is much more unusual in non-clinical medical research like the work in ICEP and the past few years have been an important learning experience. When I spoke about what we have learned, our experiences chimed with others at the event who also work in non-clinical research programmes.

How PPIE was set up in ICEP

In ICEP, PPIE work has taken the form of a group of 11 people known as the User Reference Group. All have lived experience of cancer and almost all have been cancer patients themselves. All are female – this was not the intention but unfortunately hardly any men replied initially and those who did express interest stepped down quite early on.

It was established with an ambitious set of aims. These were to prioritise research questions; co-design projects; and provide patient and public perception of risk. The aims also included dissemination; new grant applications; PPI training for programme staff; and measures of impact.

Initial progress

I started working on ICEP just over a year ago and my first encounter with the User Reference Group was a hybrid meeting in Bristol and online. A few things were striking about the group at the time:

  • The group members had a lot of enthusiasm to support the research programme.
  • They had provided useful support to several discrete pieces of work.
  • They felt they were not being used enough.
  • Members did not always have a clear understanding of the programme and its aims and approaches. In particular, many in the group had experience of PPI in clinical projects where they had advised on things like trials, which do not form a big part of our work in ICEP.

And from the role of PPI as a whole within ICEP:

  • Many researchers were not aware of the group or how to draw on their expertise.
  • Roles and responsibilities were not clear – should the group be coordinated by the PPI chairs, by the academic lead or by professional services staff? At the time I started, the academic lead had had to step away from the PPI work and the management of the group was falling primarily on the programme manager and programme administrator.
  • ICEP staff who knew about the group were concerned not to overburden this group of volunteers with requests.

Working to address challenges

Obviously, this was a bit of an unsatisfying situation. There was great enthusiasm to support the research but there was a disconnect, largely because of the novelty of including PPI in a non-clinical programme. We all needed to learn together as we went along.

One significant step was recognising that coordination of this work was naturally falling on professional services staff – so, rather than continue to hope it would happen another way, we embraced this. A new programme officer joined the programme in September and she now looks after organising meetings, sending out agendas, and being the connection point between researchers and the group.

Meanwhile, we’ve been helping strengthen the interactions between the group and the researchers. This started with an online focus group to define how the group see PPIE and how they can support the programme. This resulted in new text for our website and a fresh way to promote this work to the researchers. It has also involved the group doing two online training sessions on getting started with PPIE and engaging with diverse communities. These sessions have been really well-received. They have been a great way for the group to share more of their skills and experience and a great opportunity for researchers to look afresh at their research processes.

When researchers and group members get together, we’ve also learned that clearly defining the objectives of PPIE involvement and having more structured interactions improves what we collectively achieve. So, if researchers discuss a grant application with the group, instead of saying “What do you think of this?” we encourage them to ask more specific questions. Questions like “How clear are we about what we are proposing to do?” “How well does it meet what the funders are looking for?” “How important do you see this proposed work?” “What gaps are there in what we are proposing?” “What else should we think about?” These help conversations go deeper and draw better on the expertise of the group members.

Looking ahead

Over the past year I think we’ve seen a deeper relationship emerge between the PPIE group and the researchers. The group has provided advice on at least six grant proposals and on public engagement activities, helped develop lay summaries and told their cancer stories to be used in videos and blog posts.

But there is more to do and some challenges stem from how the group was set up in the first place.

We are now working on a grant application for ICEP’s future funding and we have been working with the group from the start. In a series of online workshops, the programme leads have presented them with the science ideas and asked structured questions to explore the public perception of the work and other things to think about. The group is also helping in developing a lay summary of the proposal and defining what PPIE should look like in the new programme. We hope this will ensure a clearer and more central role for PPIE in the new programme. And, in turn, we hope that this will ensure that the important cancer research going on within ICEP is relevant to and understandable by the wider public.

ICEP is supported by Cancer Research UK [grant number C18281/A29019].

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