Case study: Life as a Research Champion during the pandemic: Karen's story

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

I became involved in research when I was diagnosed with a series of serious, rare diseases - Primary Sclerosing Cholangitis (PSC), Autoimmune Hepatitis (AIH), Coeliac disease and cancer of the liver. I became a research participant and began to ask clinicians about research studies that I could get involved in, as well as joining patient groups to find out more about research. This put me on the pathway to becoming a Research Champion. 

What motivated you to become a Research Champion?

I was first exposed to research when my mother was diagnosed with MS. For 30 years, she and my father never stopped looking for better treatment therapies or possibly a cure, and she bravely volunteered for clinical trials and even pioneering brain surgery. 

Like my mother, my own health experiences drove me to seek answers about my conditions and find ways to help them, not only for myself but for all the other people in my situation. Becoming a Research Champion seemed a positive way to channel my enthusiasm for research, encourage more people to take part and ensure that patients and participants have a voice in the research process.

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

During the past year, as a result of the COVID-19 pandemic my experience has been a little different to previous years and I wanted to use this to reflect on some of my experiences during this time. I have been involved in a lot of digital activity to support, develop and promote research. This has included using social media to keep up-to-date with research, joining online conversations at a local, regional and national level, and sitting on a panel of reviewers to provide feedback on COVID-19 research proposals.

It has been a really interesting experience. In my opinion the past year has really raised the profile of research for patients and members of the public, improved collaboration and teamwork, and seen the research community harness the power of digital in a new way. I am also conscious that we need to make sure that we make sure that digital activity is inclusive so that people are not left out and that is something that we will be focusing on in our region.

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

Greater digital engagement as a Research Champion has helped me get involved in some really interesting discussions and dialogue with people about research. I think that during the past year Research Champions have helped to encourage more people to find out about research and I have really enjoyed the opportunity to use new tools and techniques to communicate with people about research. We have a good community of Research Champions in the East Midlands, but the focus on digital connectivity has really helped me to connect with people elsewhere as well. Given the scale of the research response to COVID-19, it has been a fascinating time to be active in research!

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

I would encourage people to put themselves forward! It’s a very rewarding experience and over recent years I have noticed that more and more researchers are really understanding the value of PPI. The past year has shown us the power of research, and the more people who can help ensure that research works effectively for patients, the better the outcomes will be.