We’re celebrating the third anniversary of the launch of our Shared Commitment to Public Involvement in health and social care research.
Vanessa Pinfold
As a charity which is all about centering lived experience expertise in research – mental health research, and that is all we do, joining the HRA shared pledge of a shared commitment for public involvement made perfect sense.
Our trajectory over the past 12 years has been something like this:
- First 5 years: Is there ‘room’ in the sector for a charity that is solely focused on transforming mental health science through public involvement, peer research and coproduction?
- Second five years: Can we push the boundaries and innovate new ways of doing public involvement, peer research and coproduction?
- Now: Where next? And how can we ensure mental health research has greater impact, including the work we do?
Public involvement in research should be more than an afterthought or a tick box exercise.
Ellie Brooks-Hall, HRA Shared Commitment Representative for McPin
Public involvement should be collaborative
We’ve written about this journey in our 10 for 10 resources, including public involvement and coproduction; a journey that started long before us within lots of other organizations and individuals including the NIHR INVOLVE team, NSUN, independent survivor researchers and academic teams across the UK.
The collaborative element of our work is essential and central in all activities – public involvement work is relational.
Each project needs a bespoke approach, built upon principles and values that prioritize reciprocal sharing of knowledge and expertise to meaningfully impact the shape of the work we do together, and the knowledge it generates for public good.
Charities exist for ‘public benefit’ and we have to keep checking in that what we offer and advocate for is beneficial. That means linking with others and learning from them.
A crucial part of the shared commitment is regular meetings with all the other charities such as Cancer Research UK, academic teams like FUSE and funders like the NIHR, who are involved. We have two young people through our network that represent us within this ‘shared commitment’ community.
Not just an afterthought
“Public involvement in research should be more than an afterthought or a tick box exercise, it should be an intrinsic part of all health and social care research,” said HRA Shared Commitment Representative for McPin, Ellie Brooks-Hall.
“Being a member of the HRA shared commitment for public involvement has taught me so much about how this can become a reality, incorporating people’s voices to make research more tailored, effective and personal. It is inspiring to see so many different organisations across the health and social care spheres work together on such an important mission.”
There are problems with public involvement in research. It can be carried our tokenistically, be poorly resourced and maintain a status quo of knowledge co-creation that disempowers user-led groups.
Challenging problems with public involvement in research
We know that this work can not be progressed uncritically. There are problems with public involvement in research. It can be carried out tokenistically, be poorly resourced and maintain a status quo of knowledge co-creation that disempowers user-led groups.
Our ambition is to continue to develop the field so that expert by experience leadership can flourish within our health and social care scientific communities, and that physical health research and mental health research is brought closer together through lived experience collaborations.
We look forward to the next three years of building this important community of practice.
Vanessa Pinfold is research director and co-founder of McPin.
Find out more about the Shared Commitment in our blog: McPin joins the public involvement pledge
Organisations from across the health and social care research sector are invited to join our Shared Commitment. Find out how your organisation can get involved with the Shared Commitment.
