Cathy Rice has been involved with People in Health West of England (PHWE) since the very beginning in various roles including as co-chair of the operational group, editor of newsflash, our fortnightly newsletter, and co-facilitator of our enhancing facilitation skills workshop.

She has also been a public contributor on several research projects and clinical trials over the years both locally and nationally.

We had a chat with her to see what we could learn from her experience.

 

What made you want to get involved with health research in the first place?

I thought it sounded like a worthwhile idea. I hadn’t worked for two years following a stroke and it was a way for me to dip my toe back into the water of the working world.

The first project I was involved in was based at the University of the West of England and was to do with GP training. I explained that I was no longer energetic, but the researcher said all I had to do was be a member of the public- someone who was not from an academic or health background. Although many people get involved in health research related to their own personal health situation, for me it was more like an escape from my situation. After the first meeting, I remember noticing that it was the longest I had gone without thinking I’d had a stroke.

What have you enjoyed most about being a public contributor over the years?

I have loved seeing how things change as a result of my contributions.

On Newsflash, sometimes the key information for an involvement opportunity is hidden away among pages of academic writing. I enjoy extracting the essentials, and making the entry accessible to everyone.

I feel I have a much clearer understanding of how research works. It’s amazing how many years academic research sometimes takes.

What has your experience taught you about what good public involvement looks like?

  • A good contact person is key. It has really helped me feel valued when I have had a trusting relationship with the research staff.
  • Be clear about the role. As with any commitment, people want to know what they will be doing, what is expected of them and what they can expect. This includes being clear about payment; is there any payment, how much and for what, will expenses be covered?
  • Keep us informed, even if that is only an email every few months to say that nothing much is happening. Of course, if there are results to share, let us know. We love seeing the benefits of our involvement.
  • Take what we say seriously. That doesn’t mean we have the final say as naturally everyone has different opinions but listen and ensure our involvement is meaningful.
  • Celebrate difference. Everyone has different personal and professional experience they will bring to the role which means involvement will vary. That’s ok, people are different, and all lived experience is valuable.
  • Facilitate meetings well. Academics have a responsibility to everyone in the room to ensure that all voices are heard. Co-facilitating meetings with a member of the public can help this and they can also keep an ear out for any jargon.
  • Be thoughtful. Think about what the experience of taking part will be like for a member of the public. On one project I was involved in I had to travel quite far to attend a meeting and, after having a stroke, the long train journey to a new place was a big deal for me. The contact person met me from the train station and accompanied me to the venue, which meant a lot to me and helped encourage my further involvement.

Cathy is passing on the baton of newsflash editor so we wanted to take this opportunity to say thank you so much for all your hard work from all of us here at People in Health West of England.