Changing the way we think about Public Involvement in Research

Author: Megan Barlow-Pay

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Public Involvement

Public Involvement in research is a powerful, potentially landscape changing, tool. Putting patients at the heart of service design, treatment and intervention development, priority setting, and implementation is part of a changing ethos and culture within the NHS and academia.

The potential impact of Pubic Involvement is huge; shaping the way we understand, research, and deliver healthcare through the direct involvement and collaboration of those people it affects.  Working with patients and members of the public can provide different perspectives, an ‘on the ground’ understanding of the needs and barriers service users face. It helps us make sure we research the questions that actually matter, and that changes to services are appropriate. It is underpinned by democratic principles, and can play a role across wider society to help ‘de-mystify’ research.

Our previous work… 

Some preliminary work undertaken by our team evidences some of the issues faced in Public Involvement. Our ‘diversity motoring’ project looked at demographic data from public contributors working with local organisations, and compared this to the wider demographics of the corresponding Wessex population. Findings from this work included an over-representation of those with high levels of educational attainment and an under-representation from ethnic minority backgrounds.

So, what’s the problem?

We know that health inequalities exist. We also know that different people access services differently, through different means and with different priorities.

As advocates for the patient voice, we believe that part of reducing health inequalities relies on addressing issues around diversity in service user involvement. Our work suggests that people from some marginalised or under-represented groups are not being offered the opportunity to shape and influence research happening locally. The outcome of this could mean services are not tailored to the needs of these groups, despite them often experiencing disproportionately poor health outcomes. The downstream effect of this can result in the potential for further increasing health inequalities in our communities.

Reaching Out Southampton

This blog details our experience of delivering on a project called ‘Reaching Out’. The project is a collaboration with community groups, to design and deliver opportunities for involvement in the heart of communities. By taking Public Involvement out of a clinical or academic setting, and into the community we are hoping to reach previously unheard voices.