What difference is public involvement making to the HRA’s work? Our public attitudes survey advisory group

We wanted to make sure that we were asking the right questions to get a better understanding of what matters to people. The survey also needed to be accessible and understandable to members of the public, and to reflect our HRA values around inclusivity.

We set up an advisory group to help with this. The group had two members of the Public Involvement Network (PIN), a Research Ethics Committee (REC) member, a Confidentiality Advisory Group (CAG) member and an Engagement Officer from the Campaign for Science and Engineering.

The group reviewed the draft survey questions and commented on content, language, structure and then tested the survey online to judge inclusivity. They also gave feedback on how we presented the findings in the report.

I teach English language, literature, and creative writing, often working with underrepresented and excluded groups. So, I brought technical experience and expertise. But more importantly, I gave feedback on where the language, layout and distribution of the survey, as well as the analysis of responses, made assumptions or excluded certain marginalised groups. I’m also dyslexic so brought my own challenges to the table, or screen in this case, to sharpen my perspective.

Public involvement ensured the survey and report of the findings were written in a clear, understandable way to people with varying levels of experience of health research.

The requirements and timelines for the group were clearly indicated from the start, which was helpful as like many public contributors, I was trying to juggle (usually badly) complex commitments. There could have been clearer and quicker communication around inevitable timeline slippages.

Working as a pair of public contributors with diverse experiences and skill sets was productive. I valued the openness to our contributions and many of our suggestions were taken on board. In particular, assumptions about people’s existing understanding in the area of health research and potential biases in the wording of questions about diversity in research. We were involved in all stages including reviewing the draft report of responses. I’m interested to know how the results will be followed up.

Some aspects could not be changed due to YouGov’s set way of working which could be frustrating. There was no opportunity to raise digital exclusion since the survey was only available online.

The insights from the group were so valuable and led to many of the questions in the survey being improved. There were a couple of ‘wow, how did we not see that!?’ moments. The composition of the group, in particular having more than one PIN member, was really helpful in bringing different perspectives and led to really rich discussions and moments of challenge that undoubtedly improved the survey.

The timelines were tight and so setting up the advisory group was done at a fast pace. Finding meeting dates that worked for the HRA team, YouGov team and the advisory group was sometimes tricky. But the PIN members and other advisory group members were clear about when they could and couldn’t be available, which really helped.

That HRA takes patient engagement seriously, valuing what we do and taking care of contributors and that we had much to offer, bringing questions, suggestions, and observations ‘from outside the box’. This improved the survey in terms of clarity, objectivity, inclusion, and accessibility.

I now have a better understanding of the scope of YouGov surveys. But I need to find a way of raising digital exclusion, in respect of surveys and so much else. We exclude many of the people (older, sicker, poorer) who most need our research and hence the opportunity to engage with the HRA.

The advisory group is a great example of how important it is to be open to challenge. It can be hard to step back and see your work from other perspectives, but getting help from others really is crucial.