By Olivia Fulton, Research and Policy Volunteer Network member, Asthma UK

Published: 14 August 2019

Did you know that there are more ways of getting involved in research than just participating in a study? Neither did I, but now research involvement is a big part of my life.

I’ve had severe asthma most of my life although now in my thirties it has progressively become more difficult to manage, to the point I’ve had to stop working and give up playing all sport.

Through my involvement with Asthma UK I discovered that there is a strong desire to involve patients throughout the whole research process; to ensure that the research is relevant to them, that it’s carried out with their best interests at heart, and that research results are communicated to the public effectively.

Being a part of Asthma UK’s Research and Policy Volunteer Network has been an incredible experience. I’ve helped researchers by being a co-applicant on a research project, becoming a member of a project advisory board and steering group, suggesting recruitment methods and strategies, suggesting ideas for specific research projects, reviewing patient information leaflets, the list goes on! I’ve loved the opportunities that have come my way and it’s a surreal experience to be able to meet and speak to researchers who could potentially make my or someone else’s life better.

For anyone out there considering getting involved in research, give it a go! Don’t let your doubts get in the way of making a difference. When I was first asked to comment on researchers’ work, I thought “This is their field of expertise, what do I have to offer?”. I shouldn’t have underestimated what I had to bring to the table. After meeting the researchers, I discovered just how much they valued my input and my experience of living with asthma.

It’s vital that people with a health condition, and parents and carers of people with a health condition are given the opportunity to influence and participate in research, and there is plenty of evidence of the positive impact that involving people can have. It ensures that the right research is done, and that the research is done right.

No matter how complicated the research, or how brilliant the researcher, patients and the public always offer unique and valuable insights. Our advice when designing, implementing and evaluating research invariably makes studies more effective, more credible and often more cost efficient as well.

For more information on my involvement in research you can read my blog where I post about living with severe asthma but also about my experience on the variety of different research projects and activities I’ve been involved in.