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16 Jan 2024

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

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

Findings from a pilot project that evaluates the impact of public and community involvement in research.

Dr Felicity Shenton is the ARC North East and North Cumbria’s Public Involvement and Community Engagement (PICE) Manager.

In this blog, she discusses an innovative approach we’ve taken as an ARC to evaluate how public members have been meaningfully involved in research projects.

The importance of ensuring that the voices of service users, communities and ‘experts by experience’ are heard in research is increasing, and is gradually becoming a mandatory requirement for funders, including NIHR.

There are national standards for public involvement and agreed working definitions for involvement, engagement and participation.

There are also tools and resources for ‘measuring’ the impact of this involvement and engagement. These tools are frequently self-assessment tools and, therefore, raise questions about the extent to which the real voices of those with lived experience is impacting on health and care research.

One service user told us: ‘When people do research and it’s not about them, it’s just guessing’. We wanted to develop a process for ensuring that the voices of people with real lived experience are making an impact, are shaping the way that research is conducted, and are central to the whole research process.

In 2022 the ARC NENC started working with Investing in Children  – a nationally acclaimed children’s human rights organisation that has over 25 years of experience delivering real changes based on the active and meaningful involvement of people with lived experience (in this case children and young people) in identifying, conducting and disseminating research.

Based on a quality assurance model (The Investing in Children Membership Scheme™) that demonstrates the process of engaging children and young people in dialogue that results in change, the model is based on evidence from and only from the young people themselves.

Using this model as a basis, we developed the ‘Dialogue and Change Award’ – as a tool to meaningfully measure the impact of public involvement and community engagement on heath and care research from the perspective of the public/communities themselves.

The Award is specifically for research projects funded by the NIHR ARC and is only awarded when people with lived experience are actively and meaningfully involved in research studies, and are partners in a transformative process.

We launched a pilot project with research projects funded through the ARC NENC Open Funding Competition (31 projects) and with the two National Consortia that are hosted by the ARC NENC (comprising of 11 projects and 2 national PICE Groups).

We have generated lots of really powerful evidence from the projects that successfully achieved the award, as well as from a number that were unable to demonstrate that they had sufficient evidence of meaningful involvement and engagement.

Here are just some of the things that people with lived experience told us as part of the evaluations:

“[The team] acknowledged that they don’t know everything. Through our input they realised that it was more complicated than they thought.”

“Time was spent developing principles about how we defined co-production.  It was good to establish this from the beginning.”

To conclude the pilot project we will be delivering a showcase event on Thursday 7th March which will provide examples of this new and innovative approach to evaluating the extent to which the voices of people with lived experience are central to the whole research process.

Follow this link to find out more about the event, and to book your place