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In this section, we aim to respond to the question you ask us the most – how has our work improved things for other people?
Sometimes this happens quickly and clearly, and sometimes it takes more time.
We promise to keep you up to date on work you’ve helped us with, and what has changed as a result.
Shared Commitment to Public Involvement
Organisations across the UK have made a Shared Commitment to Public Involvement, to prioritise involving people in health and social care research.
The Shared Commitment meetings involved 13 organisations, with some staff members and members of the public from each organisation.
Topics for monthly meetings included the wording of the commitment itself, visuals for the campaign and how to support organisations to be ambitious, specific and realistic in their commitments.
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Roger Wilson, Public Contributor
How has public involvement informed and influenced this work?
Developing such a commitment without patient or public involvement is unthinkable. The HRA and the National Institute for Health and Care Research who initially led on this work made sure that the voices of the public were rooted deep in the project from day one. Did it have an impact?
What’s gone well, and what hasn’t gone well?
Most of the lay people involved are experienced advocates and have brought a range of experiences across disease or condition settings, and from personal backgrounds. This brought a breadth of life experience into the process. The language of the statement was significantly influenced, with use of plain language being a frequent discussion point. This was not a place where a nuanced or corporate approach was appropriate.
What have you learnt?
I have learned a lot from and about those who offer the patient voice from other disease backgrounds. The impact on them of their condition and their sense of priorities were often new to me. I could feel I understood knowing that my background was strange to them too, and we listened carefully to what each of us had to say.
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Barbara Molony-Oates, Public Involvement Manager at the HRA
How has public involvement informed and influenced this work?
Working together to design the illustrations helped me see the images through other people’s lens. We changed the way the man was standing with a stick, we represented age and different body masses, and tried to include people with invisible disabilities. The final illustrations are more visually diverse, so more people can see themselves represented in them and feel included.
The two illustrations are below, the earlier one at the top and the improved one underneath.
  What’s gone well, and what hasn’t gone well?
Initially we tried having meetings on Microsoft Teams. This didn’t work well for people on different networks and many people couldn’t participate in the chats. We changed to Zoom which works much better.
What have you learnt?
In the first group meeting, public contributors weren’t being heard. We added additional pre-meetings with just the public contributors. This made sure they had an equal voice. They could disagree with each other in a safe space, and then come to a consensus which they brought to the meetings of the whole group.
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