Sarah Knowles1, Jennifer Voorhees2, Claire Planner1
- NIHR School for Primary Care Research, University of Manchester
- NIHR CLAHRC Greater Manchester
We were very pleased to see Simon Denegri’s post this Summer encouraging those of us here in the UK to learn from our neighbours across the pond about patient and public involvement. In Canada and the US, ‘community based participatory research’ (or CBPR for short) is a research approach that emphasises working with communities to design and conduct research meaningful to them. It has some similarities with how we work with patients (Patient and Public Involvement – or PPI for short) in health research over here, but there are some key differences as well, which means there are some great opportunities to learn. It is exactly this that took us, along with colleagues from the NIHR Greater Manchester Patient Safety Translational Research Centre, to New York last November to discuss involvement approaches with our North American colleagues at NAPCRG.
In our workshop, we wanted to demonstrate how comparing and contrasting the UK model of PPI with CBPR could show the relative strengths of each, and identify areas where one approach could learn from the other. The workshop attendees (lured there with the promise of Cadbury’s chocolate and Yorkshire gold tea) were impressed for example to hear that the NIHR expects all grant applications to include some level of PPI and that the funding panels themselves include public members. They also admired the fact that we have a national centre for supporting patient involvement in Health Research in INVOLVE. We were able also to discuss the downsides of this more top-down, structured approach with, for example, the risk that people are just ‘ticking the boxes’ and meaningful involvement is harder to ensure. This more formal approach, where individual patient public contributors are invited to sit on committees or panels, also contrasted with the more hands-on approach of CBPR which emphasised going out into the communities we serve – and certainly some of our PPI colleagues here in the UK think we should take a leaf out the CBPR handbook and make more effort to meet people in their own spaces, outside the University.
CBPR also aims to include all relevant stakeholders as partners, rather than excluding for example health professionals from the process, with one researcher commenting “We want everyone, from the patient to the doctor to the receptionist, to be engaged”. This contrasts with our approach in the UK, with the NIHR for example specifically excluding health professionals when talking about PPI. This has had the benefit of making sure that we really do try to involve patients and service users directly rather than listening to professional voices as a proxy for patient experience (“I know my patients think this…”), but we can also see how this broader approach can have benefits by bringing all interested parties to the table together. In the UK, experience based co-design probably comes closest to this, as it brings both staff and service users together to discuss their experiences, but in North America CBPR encourages researchers to go beyond services alone and think about other organisations and roles in the wider community that need to be consulted.
Fundamentally, UK PPI and CBPR share a philosophy of valuing partnership and collaboration (CBPR itself being referred to, like PPI, as more of an ‘approach’ than a method) and that means there is much to be gained from joining forces. Certainly the researchers we met at NAPCRG were extremely keen to stay in touch and explore ways of working together in the future.
Here in Manchester, we’re hoping to explore the potential for CBPR methods to be applied in studies in the UK, and particularly to further examine how aspects of CBPR could complement or enhance the way we do PPI. Two of our team, Dr Claire Planner and Dr Jennifer Voorhees, recently attended the Annual Working Meeting of the International Collaboration for Participatory Health Research in Berlin to speak with international leaders in the field about the approach. We’ve set up an informal network of researchers interested in participatory research and hope to run some networking events, so if this has whetted your appetite and you’d like to know more, please do get in touch!