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In October 2022, the NIHR Applied Research Collaboration (ARC) North East and North Cumbria (NENC) joined other national and regional health and social care bodies in a pledge to improve public involvement in research.

We did this by signing up to a formal Shared Commitment to Public Involvement in Health and Social Care Research.

The Shared Commitment has been developed by the Health Research Authority (HRA) and aims to bring about changes which will drive up standards in health and social care research. 

This week (10 March) will mark the anniversary of the launch of the Shared Commitment to Public Involvement in Health and Social Care Research.

As part of this, our Public Involvement and Community Engagement (PICE) Manager, Dr Felicity Shenton has shared her reflections on why meaningful public and community involvement in research is so important.

What difference does it make? Reflections on public involvement and community engagement in health and social care research.

The importance of ensuring that the voices of service users, communities and ‘experts by experience’ (those with real life experience) are heard in research is becoming a mandatory requirement for funders, including the National Institute for Health and Care Research (NIHR).

There are lots of tools and resources available for measuring the impact of involvement and engagement. However, these tools are frequently self-assessment tools and raise questions about the extent to which the real voices of those with lived experience is actually shaping and impacting on health and care research. Often, the assessments will be completed by people with an interest in health and care research, or researchers representing the views of the public contributors.

The NIHR Applied Research Collaboration (ARC) North East and North Cumbria (NENC) has worked with Investing in Children, a nationally acclaimed children’s human rights organisation, to develop a more meaningful way of measuring and demonstrating the impact of public involvement and community engagement.

Investing in Children has over 25 years’ experience of delivering real changes based on the active and meaningful involvement of people with lived experience in identifying, conducting, and disseminating research.

We worked with Investing in Children to develop the ‘Dialogue and Change Award’, which is a new tool to measure the impact of public involvement and community engagement (PICE) on heath and care research, but from the perspective of the public and communities themselves.

The Dialogue and Change Award is based on a tried and tested, evidence-based quality assurance model already used by Investing In Children (The Investing in Children Membership Scheme™) that demonstrates the process of engaging children and young people in dialogue that results in change, using evidence from and only from the young people themselves.

This ‘Dialogue and Change Award’ model has been applied to research projects funded by the NIHR ARC North East and North Cumbria, and is only awarded to a project when people with lived experience are actively and meaningfully involved in the research studies and are partners in a transformative process.

The Award is made when there is evidence of dialogue; a conversation that involves the PICE members, followed by change; they make a difference to the research process, tools, documents, analysis, implementation and other relevant aspects of the project.

The Dialogue and Change Award has provided a very powerful tool for enabling the NIHR ARC North East and North Cumbria to collect evidence directly from public contributors about the difference they have made to health and social care research.

Feedback from our public contributors has been really positive. Here’s what some of them have told us:

Our opinion has been valued on an equal basis (with other members of the research team). Everyone was equally respected. Rashmi, PICE Group Member.

I think it was an example of how well *****(the researcher) took people’s ideas and acted on them, but also how she fed back how those ideas had made a difference. I also it is an example of the flexibility of the project research, that people were encouraged to keep in touch with the team in between meetings. It helped with a sense of community and meaningful engagement that we could engage when and how it worked for us too. Lesley, PICE Group Member.

And the public contributors were really clear about what difference they had made to the research:

The project had a level of flexibility, to adapt and respond to the needs of the co-production group as things went on. If things needed to be communicated in a different way, representation considered or important themes to be explored these things could be honestly and openly discussed amongst the group when needed. Chris PICE Group Member

Seeing someone take on board (what you have said) and feed it back (via the video) is very powerful and impactful. It’s more powerful than a written piece of paper. Carol, PICE Group Member.

Other comments included:

They wouldn’t have got it on their own, they need the experience behind it.

When people do research and it’s not about them, it’s just guessing.

Autism research needs to be carried out with and by autistic people – it’s a civil rights movement – we need a social revolution.

Anything that came up was taken seriously and then put into the programme. 

Thank you for including me. I feel I’ve been part of something so beneficial.

They put some stuff together and then bounce it back to us. We’ll either tear it apart or agree with it.

They’ve taken all that on board.

You recognise it when you read it and go, ‘that’s me!’ 

It was really therapeutic.

It’s been really worthwhile getting involved.

 It’s valuable, I’ve gained knowledge.

They’ve really used the public contributors’ suggestions.

It’s not such an academic, scientific paper that few people would be able to understand. They’ve used a narrative structure, they’ve put a person to it.

It’s been a lovely project to be part of. I’ve felt very valued.

If you would like to make a difference as a public or patient contributor, we’d love to hear from you. You will be compensated for any time you spend on activities. 

Please email us at [email protected] if you’d like to be involved, and we’ll be in touch.