Listening to people
with asthma

Malayka Rahman works in the Research Team at Asthma UK, she talks about her role in listening to, and including, people with asthma in our research.

As Research Officer, my role is quite diverse. Some of my day-to-day work involves monitoring finances for projects we’ve funded and looking at the outcome of research we’ve funded so we can show people who’ve supported us where their money has gone.

The part of my role that I enjoy the most is working with the Research and Policy volunteers. When people think about public involvement in research, they think it means research being done to, or being about, a group of people, when in reality it’s so much more than that.

As well as supporting our campaigning work, our Research and Policy volunteers are able to influence asthma research in many different ways, like identifying which areas of research are important to prioritise for people with asthma, inputting on the design of research projects and assessing research applications.

It sounds really daunting and some people may wonder how a person with no scientific experience can become involved in assessing research applications.

A lot of people think that doctors and scientists are the experts but actually people with asthma are often experts themselves – they’re the ones who know what it’s like to live with their condition. Whilst our researchers have the scientific and medical knowledge to comment on which applications are the best science, people affected by asthma are able to comment on things like whether people are likely to take part in a study or how important the research is for people with asthma. To me, both types of knowledge are important and have equal value.

Working with the Research and Policy volunteers during the grant round process (in which the projects we’ll fund over the next year are chosen) has been my proudest moment.

One of the highlights was when a volunteer said he felt empowered to sit with his doctor and have a level discussion about his child’s asthma after his training and I thought: this is what we really want. For people to feel they know about asthma and feel they’re confident enough to speak about it.

We’ve also been working with the Alzheimer’s Society and Multiple Sclerosis Society to deliver a series of joint training session for our volunteers.

It’s a really excellent opportunity for our volunteers to increase their knowledge about research but also to meet volunteers at other charities.

If anyone would like to become a Research and Policy volunteer, they can contact our Supporter & Information Team (0800 121 62 55; info@asthma.org.uk).