By Ellen Stewart
Patient and public involvement (PPI) in health research is a field of practice which has grown at pace, and is now understood as central to high quality health research. The NIHR defines public involvement in research as “research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them”. This imperative also applies to public health research. For example, the NIHR’s Public Health Research programme specifies a requirement for public involvement (rather than the more conventional NIHR framing of public and patient involvement) and directs researchers to the standard NIHR INVOLVE guidance and resources.
This shift in focus requires researchers to reflect carefully on the processes they put in place. Public health almost always operates with a population lens, and the knowledge sought out in the form of ‘lived experiences’ are much more widely distributed than in the examples of, say, respiratory medicine. The parallel in that field is that a public health lens might centre all our experiences of living with excessive levels of air pollution, while a healthcare lens would reasonably focus on accessing the knowledge of people with experience of living with a specific respiratory health condition.
Sometimes this wider lens, and lack of an obvious patient community to recruit through, means that public health research can be quite poor at engaging with communities. In large-scale modelling projects, like SIPHER, this can be magnified because the data we work with is far removed from the people whose lives it reports.
We wanted SIPHER to do something different, and our approach has a couple of distinctive elements.
One is that engagement is a core part of the consortium, sitting within the overall Consortium Management Group in a workstream on evaluation, and delivered by a Co-Investigator on the grant. The goal here is that engagement is integrated into the intellectual agenda of SIPHER, within a birds-eye view of the complex and multi-faceted work of the consortium across many organisations, rather than operating separately within each workstream.
The second is that, rather than set up select panels with people we recruit directly from a defined population of patients, we work in partnership with local community organisations in the geographical area of each policy partner. These organisations bring a range of strengths to the consortium and aren’t simply recruiting participants for our panels. They have significant place-based local knowledge about the publics they work with and serve. Staff have existing trusting relationships with service users and local community members, which should facilitate our panel members to inform and challenge our work from the vantage point of their own knowledge of the issues. These collaborations mean we can direct the budget for venue hire, catering and facilitation into organisations who are working for these local communities, and who are in many cases struggling to keep afloat due to the wider context of austerity.
Across the remaining years of the programme, we hope that these community partner organisations will scrutinise and shape our work from the perspective of people disadvantaged by the kinds of inequalities we will be modelling.
Much of the last six months has been spent planning ways to move workshops with our community panels online, paying particular attention to making workshops digitally inclusive and accessible. This should ensure we still enable our participants and partner organisations to engage with the research, even if we aren’t sitting round a table together with tea, biscuits and a lot of post it notes. We will post regular updates on our community panel workshops across the remaining years of SIPHER’s work.