What does good public involvement look like? A public perspective

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.

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Are you interested in emergency care and how it is delivered in Bristol, North Somerset and South Gloucestershire?

Closing date: Friday 27 September

For: Anyone interested in how emergency care is delivered in in Bristol, North Somerset or South Gloucestershire. If you have had recent experience of emergency care services in the region that would be great but is not essential. You only need an interest in emergency care.

What: A group of researchers and health professionals based in Bristol are looking for members of the public to help them identify the major problems in emergency care (Accident and Emergency Departments, Urgent Care Treatment Centres, Ambulance call-out) that need to be tackled.

When: A two hour meeting will take place in the seminar room, CLAHRC West, 9th Floor, Whitefriars, Lewins Mead, Bristol, BS1 2NT, either on Tuesday 1 October or Thursday 10 October 11 am -1.00 pm.

Payment: A cold buffet will be provided at the end of the session, you will be paid and all travel costs covered.

For more information: To find out more email Helen Baxter helen.baxter@bristol.ac.uk or Julie Clayton julie.clayton@bristol.ac.uk and confirm which date works best for you.

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Provide your views on research funding applications

Closing date: Friday 11 October

For: Open to everyone who has experience of using NHS or social care services as a patient, service user or a carer or as a representative of patients, service users or carers.

What: Bristol, North Somerset and South Gloucestershire Clinical Commissioning Group (BNSSG CCG) are looking for people to join their remote patient and public involvement group. This work will involve assessing funding applications from researchers looking to work with the local NHS. Public contributors will read funding applications, score the applications using a pre-set scoring sheet, and provide feedback where appropriate.

When: Applications will be sent to reviewers on Monday 21 October 2019 and reviews to be completed by Friday 8 November.

Where: The funding panel membership will be entirely conducted by email.

Payment: As a public contributor you will be offered a fee at the point when you are asked to become involved in reviewing a research funding. Reasonable expenses associated with your involvement will be reimbursed.

For more information: Click here to download further information including how to apply. You can also contact Kat Bagi on 0117 900 2227 or Katalin.Bagi@nhs.net to discuss the details.

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