Priority setting for ARC research – can we take a longer term view?
By the Yorkshire and Humber ARC's PPIE Leadership & Support Group (PLSG): Claire Marsh, Christine Smith, Ruby Bhatti, Joyce Fox
In ARC Yorkshire and Humber, we take a continuous learning approach to all our Patient and Public Involvement/Engagement (PPIE). That’s us as a PPIE Leadership & Support Group (PLSG) comprising 2 professionals and 2 public contributors, and us as the whole team of researchers that we support. We know that we cannot give researchers any easy answers and whilst there are many off-the-shelf guides, these need to be adapted to context. We therefore see PPIE as a learning process – one in which researchers and the public come closer together over time around the common goals of improving health and social care. In essence, we support researchers to find more and more ways to ‘let others in on the action’ in ways that are meaningful, rewarding and relevant for everyone who gives their time. Each year then, we commit to focusing our collective learning around a persistent challenge of how researchers can involve and engage, so that they can reflect and develop their own PPIE practices. We call this an annual (approximate timescale) ‘deep dive’.
We have just come to the end of a deep dive on ‘engaging patients and the public in priority setting’ as this was a topic that all ARC Themes were grappling with. At the start of the year, we gave our Themes a simple guidance document summarising key principles for a comprehensive and transparent process and some popular methods used to do this. We asked researchers what they were doing, why, and at regular intervals, how things were going. We have three key learning points to share from this process:
Researchers are good at collecting A LOT of data around priorities, notably using surveys and follow-up discussions. In the 'Mental and physical multimorbidity' theme, researchers received over 100 responses to arrive at a top 10 list of research priorities. In our ‘Older People with Frailty’ theme, 237 responses led to a top 10 list.
Researchers can be supported to develop inclusive approaches (e.g. getting the surveys out to different people or considering alternative methods to surveys where necessary). The PLSG acted as critical friends for researchers in this regard. So, for ‘Mental and physical multimorbidity’ the PLSG helped the team improve their response rates from particular demographic groups by sharing the survey beyond the researchers’ usual networks. In the ‘Older People with Frailty’ theme, the challenge of how to capture the perspectives of those older people without mental capacity was highlighted. The notion of reaching out to carers who could speak on behalf of these older people was debated and it was agreed that a survey, already designed for carers, could be used partially for this purpose alongside face-to-face discussion groups for care home residents, relatives and staff.
It is not always simple to systematically USE the priorities lists obtained through these exercises because they do not map neatly onto ARC timescales for pre-determined outcomes (e.g. ‘intervention developed by x date’), funding call themes, or indeed researcher priorities. The danger therefore is that local priorities will remain secondary to those set by the wider system of health research.
In response, our reflections have enabled us to suggest an alternative approach:
To relinquish the notion that priority setting is a one-off exercise to be used for short-term planning. This rushes the process and does not easily allow time to adequately respond to inclusivity challenges as they arise. E.g. in our ‘Older People with Frailty’ theme, gaining a more comprehensive understanding of the perspectives of groups such as carers would require more time. Response rates for this group were relatively low and whilst more in-depth discussion groups are planned, they will take place after the Top 10 has been finalised.
To instead view the process as ongoing where the priorities that have been obtained through any exercise, are held by the theme researchers in a live document that is continually evolved as more insights are gained, and more inclusivity achieved. Of course, the methodological impacts of this ambition would need to be considered – could new priorities be fully merged with existing ones, or are existing priorities just a reference point that informs further priorities work? However this is addressed, a review would address the important point that even the most evidence-based and systematic priority setting method (e.g. nominal group technique) will not be completely inclusive. There will always be additional voices that can be heard – usually the ones that require researchers to reach out beyond their comfort zones. Context will also keep changing so research priorities must keep up.
Help all theme researchers to own this live document so it is embedded across all theme activity. In our experience, ARC projects are instigated for many different reasons other than locally-set priorities (e.g. answering a specific funding call). We have observed that what patients and the public often give as priorities are fairly broad (e.g. maintaining independence; health professionals better understanding of links between physical and mental health). So e.g. if the focus of a funding bid is to ‘improve physical activity for older people’ it may be possible to consider an already-identified priority such as ‘maintaining independence’ and ensure this is included as a measurable outcome for the research.
To conclude then, we will endeavour to ensure that the wealth of existing knowledge about people's priorities that has been gleaned already in our ARC programme is utilised fully now as well as into the future. As one 5-year ARC programme closes and another potentially begins, priorities already gathered must also be used to inform any future ARC themes. We believe there to be real potential in priority setting exercises being viewed, not as one-off linear exercises but as provisional, small steps in building longer-term relationships and understanding between researchers and their communities.
This blog was written by Claire Marsh, Christine Smith, Ruby Bhatti and Joyce Fox, PPIE Leadership & Support Group (PLSG) at Yorkshire and Humber ARC.
3 November 2022