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Case study: Victoria Bartle: promoting health research

"I think that people are currently more aware of medical research due to COVID and the publicity around researching symptoms, treatments, effects and vaccines, and I hope that many people see the variety of research, stay involved and move to other projects..."

Please tell us a little bit about yourself and your experience of health research?

In 2016 I had to stop working due to my ongoing health conditions. This was a huge change for me and I struggled to come to terms with my move from an active, successful, independent woman, to a person reliant on disability benefits and support from family, friends and ultimately carers as my conditions deteriorated. I wanted to do something to keep my mind working, to meet new people in similar situations to myself and also feel as if I was still being a useful member of society even when I wasn’t able to work.

Due to my previous role as an recruitment adviser I knew that there were lots of different volunteering opportunities other than the obvious thought of working in a charity shop, however I didn’t know that volunteering also includes taking part in medical research which immediately interested me due to my own circumstances and recent experiences, which highlighted areas where I hoped for improvements in the treatment of others like me with multiple long term incurable conditions that dramatically affect our quality of life. I learnt that in the world of Medical Research PPI stands for Public and Patient Involvement (and is not only the common term for mis-sold financial insurance), and that there are a number of different ways you can volunteer to support research.

What motivated you to become a Research Champion?

My first step as I was reducing my hours at work, was when I volunteered to be a Health Champion for the Fatigue Clinic that I go to, and this led to my meeting friends who introduced me to other medical research, PPI and the variety of projects that I could participate in. Once I stopped working I became a member of the Voice research support group, which gave me the opportunity to learn more about health research. I have a regular meeting each month where I have to use my brain, and feel that the feedback I give the researchers is beneficial and can help to direct and affect their projects. It was, and still is, an important part of my month and has led to my becoming involved in a few other projects and ultimately deciding to volunteer as a Research Champion in order to promote the benefits of becoming involved in health research to others. Not just for the obvious impact on the research itself, but the personal benefits as it enables me to use the skills that I still have, but on my own terms and in my timescales so that I can manage as much or as little involvement as I am able to around my health conditions. 

What activities have you been involved with as a Research Champion and what difference do you feel they make to others and to research?

Since becoming a research champion I’ve been part of our monthly meetings, been invited to webinars and zoom meetings to discuss specific projects, provided PPI opinions for a couple of research projects and become a co-applicant on a new project which has just been awarded funding and will hopefully be going ahead in the new year. I’ve read and commented on research funding applications, assisted with rewriting plain English summaries, written letters and contributed to the ADMISSION application as a PPI member and a co-applicant and participated in a national meeting with various medical and research professionals who are looking at how to direct research into multiple long term conditions (which both fall under the umbrella of the NIHR strategy for research into multiple long term conditions). 

How has being a Research Champion benefited you and how have you been supported?

When I registered interest in becoming a research champion I was contacted by a member of the team and we had an initial conversation about what the role would involve and what support and training was available. I then had a couple of Induction training sessions with some other new champions covering the role, what was involved and what the expectations were as well as an overview of medical research, it’s terminology, directive bodies and local initiatives and groups that could provide more information and where to go for opportunities to become involved. The role involves a monthly meeting where we discuss current and potential projects, are presented to by researchers and other professionals and provide feedback on research projects and advice from a PPI perspective. Opportunities are distributed and we can pass them on to people within our contacts or get involved ourselves.

Being a research champion has led to me being able to participate in 2 national research projects that I wouldn’t have heard about otherwise. I am also now aware of a number of projects, both local and national which interest me, where to find new opportunities and how to involve myself.

During the COVID restrictions this past year this has obviously all been done online, and has been engaging and interesting, but in the future I’m looking forward to getting involved in person and hopefully manning and speaking at events and supporting others to get involved in medical research as it’s ultimately very rewarding. 

Is there anything else you would like to say about being a Research Champion, including to others considering volunteering in this role?

I think that people are currently more aware of medical research due to COVID and the publicity around researching symptoms, treatments, effects and vaccines, and I hope that many people see the variety of research, stay involved and move to other projects, thus providing a much broader PPI perspective which will have a huge benefit to the quality, diversity and accuracy in future research projects.

There are a number of ways you can get involved. Apart from the groups, websites and apps that I’ve already mentioned, your GP surgery may have a patient group that you can join to affect decisions made about healthcare your own local area. The NIHR has a number of ways you can get involved, participating in research projects, joining funding committees, becoming a research champion or reviewing documents and finding out more information about current areas of research. The Be Part of Research website has all of the information about current projects and criteria for involvement that you can search through to find things that interest you personally.

I take a lot of pride in the projects that I am involved with, and in all of the work that I listen to, question and provide feedback on as I know that it is all driving towards improving the care and support that we all receive from our healthcare services. I love feeling as if I’m still participating in things since I had to stop working, it makes me feel useful, relevant and as if I am being of benefit to society in a small way. There is so much more involved than I initially expected and I am able to involve myself in my own areas of interest, and personal experiences of my own health conditions and those of family and friends. My previous work and life experiences all add to my ability to be an effective research champion and PPI member and I’m looking forward to more involvement in the future.

Interested in becoming a Research Champion? Visit the Research Champions page on NIHR’s website.

To find out more about research studies taking place in your area, go to the Be Part of Research website.