Researchers' experiences of patient & public involvement

Tom

Male
Age at interview: 54

Brief outline: Tom is a clinician who does some research in which he’s been involving patients for about 10 years.

Background: Tom is a Consultant Psychiatrist and the Associate Medical Director for research for an NHS Trust. Ethnic background: White British.

Audio & video

Tom began conducting research in bipolar disorder about ten years ago. He first involved people who had bipolar disorder in a funding application for a project after being advised to do so because it was a mandatory part of the process. Even though it was quite late on in the process, Tom didn’t want the involvement to be tokenistic, so he conducted a workshop with members of an already existing group of patients with bipolar disorder. They discussed the design of the research, the information leaflets, the consent form and issues around the interviews they proposed doing. Tom said he felt quite anxious about running it because he’d never done anything like it before, but said, ‘They were very enthusiastic and very insightful and it was a useful experience.’

Afterwards, Tom realised he should have involved people at an earlier stage in the process. He decided he wanted a patient representative to sit on the project steering group, but despite approaching several he was unable to find anyone who would agree to do it. This was complicated by the fact that the patient group disbanded because there was no funding to support it. 

Since then, Tom has been working with the James Lind Alliance on a Priority Setting Partnership to find out what questions should be answered by research into bipolar disorder. Patients, carers and clinicians have been involved in the process, which resulted in a survey that has been completed by over 2500 patients, carers and clinicians to find out what their priorities are. The National Institute for Health Research is committed to funding research based on patient priorities, so Tom is confident that it is a worthwhile exercise. 

There is no question for Tom that involvement improves research and he said he wanted patients to keep trying to get involved by speaking to their clinicians about it. He said he would encourage other researchers to involve patients because ‘they will make a valuable contribution’ and because involvement isn’t as difficult as it may seem.

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