Involving people affected by asthma in our research is an important part of our work. ‘Involving’ people means working together to carry out research. This collaboration improves our research and ensures it is relevant to people in their day-to-day lives.
Being a patient or lay volunteer is different from being a study participant. You can get involved in every stage of the research, and share your insights about what it is like to live with asthma or look after someone with asthma. This information often helps our researchers understand better how to improve their research for patients, including what questions they should be asking, what barriers people experience, and how they feel about certain areas of research.
“I have been involved personally because I am married to an asthmatic who has COPD and our son also had asthma - so I have lived with it for over 40 years now. For all of us PPI members, and I am speaking generally, we have always had a good relationship… we have always been made to feel that we are part of the decision making process when research money is being distributed. To feel that you play an active part alongside researchers and academics makes you feel that you are an equal and valued member.”
“I value all the opportunities that my PPI involvement gives me. The chance to comment on the work of the Centre and the opportunity to shape policy too. I like the fact that we meet as equals and everyone’s opinion and knowledge is valued. I have commented on and had a say in the next generation of research e.g. PHD studentships. It is essential that people with different backgrounds and expertise and age are involved thus creating a reflection of wider society.”
“I am so proud and honoured to be part of the centre. I fell into the centre after doing a couple of interviews for World Asthma Day back in May 2014 when the National Review of Asthma Deaths was published.
I am amazed at the dedication so many people have to try and better the lives of people with asthma. It is a surreal experience to be able to meet and speak to researchers who could potentially make my life better. In the past I have seen research as something that happens but never did I think I would be involved in it, influencing it or even benefiting from the outcomes.
One of the key differences about AUKCAR is that it has patients at the fore front. They want to involve people with asthma or those affected by asthma throughout the whole research process to ensure that research is relevant to people with asthma, carried out with the patient’s best interests at heart and that research results are communicated to the public effectively.”
If you are also interested in taking part in studies as a participant, find out more about our REACH database for study volunteers REACH database for study volunteers.