What difference is public involvement making to the HRA’s work? A pilot to develop access and support needs for public contributors

In September we invited people with access and support needs to help design a form and draft emails. These will help us collect and share information about what support people need.

This was the first part of a bigger pilot to test these documents with people who are currently involved in our work.

We were keen to hear from people who had never been involved in our work before and were thrilled to receive 21 applications. We met with the 8 people who were shortlisted in October at an online workshop

My involvement was to help design a form and draft emails for the HRA support and access needs work.

The HRA has always been an organisation I wanted engagement with because as a chronic sufferer of mental health issues for over 40 years, effective treatments, therapy and NHS services have been pivotal to my survival and quality of life. With huge negative, positive and even damaging experiences, PPI engagement is crucial to avoid future mistakes or gaps and to address what patients actually need, desire, find helpful and supportive to live their best life possible.

PPI is quite a buzzword at present but I see too many tokenistic offers of involvement which only serve to tick boxes. Realistic commitment to listen to us necessitates the organisation to appoint a key lead who understands and has true empathy with our needs. So how refreshing to find Barbara at HRA who superbly facilitates genuine PPI engagement. HRA have gold in her!

We involved people early in the planning stage for this project, and as a result they were really able to influence how the next phase is developed. They suggested some significant changes, and we have now implemented them for the next phase. The biggest changes involved developing an online form instead of a word document for people to complete and reducing duplication and the wordiness of a lot of the emails.

For me, knowing that were involving people with access and support needs that we would not know about until they had been recruited, meant that I really had to think carefully at the planning stage about the amount of time that might be needed in between recruitment and the actual activity in order to be able to put any adjustments in place. I realised that we need to be doing this more proactively for all of our involvement work, as we never know until after the recruitment whether people have got access and support needs.

Real difference was made in the meeting not only to me but in the wider action later taken. My comments were fully considered and acted upon as evidenced in the reported recommendations to the HRA post meetings. With a follow up email of "you said/we did" it was clear exactly how PPI from myself and other contributors was used and actioned.

People’s feedback during and after the session was heart-warming, as they were thrilled that we are doing this work which needs addressing across many organisations, and that they were involved at such an early stage.

People told us that sharing draft documents in advance was helpful, but we could have allowed more time for this and possibly used AI to review the papers before they were sent to reduce duplication

Being unable to make the initial focus group I was offered an alternative slot at my convenience. How inclusive when if you can't make the prescribed time, no involvement is often the norm? Barbara's correspondence pre-meet enabled me to contribute at a time convenient to myself with advice for sorting out any technical difficulties on the day. When my anxiety shoots up before a meeting such contingency plans are so helpful and ensure I will participate without anxiety taking over.

The involvement itself was so productive, with clear and simple questions given in advance, allowing me to prepare as much I wanted beforehand with no surprises or fear of what might come up. I was given adequate time to think and pause with no overlong silences or being cut off mid-flow. I had time to give my thoughts which were reflected back with suitable and relevant comments, ensuring we were both on the same track. I was reassured my comments were appropriate and understood in meetings where I need to know that my contribution is relevant. This is really important because I can sometimes miss an initial point and need further explanation. Of course, not all desires were met, but at least considered, maybe tweaked but never dismissed as irrelevant.

Being able to contribute my voice, be truly heard then have my contribution fed back to the HRA without changes is so refreshing and reassuring when words can often be missed out or changed if uncomfortable or challenging.

During and after the workshop some people queried our policy on payment of expenses, and I should have clarified the scope of the work more clearly, as this was not something that could be addressed by the pilot.

I really enjoyed hearing lots of different perspectives, and I am looking forward to the next phase of the work, as I am more confident that the papers and form will be more accessible and easier to understand

No. This, for me, is genuine PPI and using Lived Experience in the positive and expert way it should be. I look forward to further participation knowing it will make an impact.