Do we need to do PPI differently?

Dr Mel Hughes was invited to present at Imperial College London’s Patient Public Involvement (PPI) network this week to talk on the theme of inclusivity in PPI. The PIER partnership and the newly formed Research Centre for Seldom Heard Voices are exploring challenges and opportunities for engaging seldom heard voices in PPI. The basis of our work is that those most affected by health inequalities often have the least opportunity to inform and shape health research.

Beresford (2007:310) highlights that if diversity and the barriers that can be in the way of increasing diversity are not addressed, ‘participation is likely to be partial, and reflect broader social divisions and exclusions’ i.e. it will further reinforce health inequalities. This led to some great discussions within the PPI network at Imperial. The main focus was whether we need to approach PPI differently to engage a more diverse range of voices.

BU researchers are finding that there is a need to think differently about who is involved and how they are involved. Only a certain demographic of people will feel comfortable and confident engaging in focus groups, providing feedback on plain English summaries or voicing their opinions in formal settings. These methods and voices are valid but tend not to be particularly diverse. BU’s current work seeks to engage marginalised groups such as rough sleepers in PPI activities by creating outreach opportunities for researchers to ‘go to them’. As a starting point, the team are challenging the notion of ‘hard to reach’ groups. In the experience of BU researchers, marginalised groups are easier to locate and engage when collaborating with community organisations such as night shelters. The challenge is to change a culture of PPI which relies on the public ‘entering our world’ rather than us seeking a wider range of voices out in the community.

It would be good to hear your thoughts and examples. Dr Mel Hughes,