How people with asthma can make a difference to research
Author: Nile Amos, Research Operations Officer
Date: 14 June 2017
Why do patients approach us looking to get involved in research?
Three people every day die from asthma, and even if they aren't bereaved themselves, people with asthma want to be a part of the process of finding out how to stop anybody else losing a loved one to asthma.
Asthma UK's Research and Policy volunteers, our expert patient volunteer network, have been providing unique insight for asthma researchers for over ten years. Asthma UK puts a lot of effort into helping scientists to continue their work towards finding a cure, but more than ever, people with asthma are involved to help us make sure that the research we support is relevant, useful and has the best possible chance.
Patient and public involvement in research (or PPI) is increasingly expected, if not required by research funders. Asthma UK involves people affected by asthma at all stages of our research programme; from telling us what the priorities for research should be to help shape our research strategy, to selecting which research applications to us should be funded, to guiding researchers in external projects.
Daniel Russell is one of our expert patient advisors, who has used his own experience as both a person with asthma and also the parent of children with asthma to help guide several researchers in the last three years. In 2016, Asthma UK was contacted by the University of Southampton, who were looking for a patient's perspective on a digital tool to be assessed through a clinical study. Daniel has been working with these researchers to help them better design research studies looking at analysing different techniques for the self-management of asthma.
As Daniel himself describes, there were a number of ways in which he was able to help improve the study. "A few examples spring to mind. I helped to develop the first version of a tool called 'My Breathing Matters', a digital intervention to try to improve patient self-management of asthma. By giving feedback on the messages that the website delivered to people with asthma, I helped to make them as effective as possible."
Recruitment of participants in clinical studies is a common challenge, and Daniel was also able to play a part in helping the study meet targets here. "I advised the wording and design of the patient materials, to help recruit people to take part in the My Breathing Matters study. To help people feel comfortable knowing what they're signing up to, I was asked to check that the materials answered questions that people with asthma were likely to have, so that they would want to take part in the study."
Asthma UK's patient experts also to help advise clinical decision-makers. For example, the Scottish Intercollegiate Guidelines Network (or SIGN) requested the help of Asthma UK's expert volunteers to sit on their Guideline Development Group, to inform the evolution of asthma care guidelines and patient-facing publications. Since Summer 2016, respiratory practitioners have been able to turn to our volunteers to assess, test and trial guideline information before it's put into the public domain.
Asthma UK believes that the involvement of patients can be varied, and it can be subtle in implementation. However, with volunteers who are enthusiastic, have received Asthma UK's unique pioneering volunteer training and who can call upon their own experience as patients, they can make a lasting difference to the way researchers and decision-makers think about their work.
To involve people with asthma in your work, contact the Asthma UK Research Team:
E: firstname.lastname@example.org / T: 0207 786 4946
If you're a person with asthma and would like to become a Research and Policy volunteer and share your experience to help inform asthma research, you can find more information on our research opportunities pages.