Researchers' experiences of patient & public involvement

Bernadette

Female
Age at interview: 39

Brief outline: Bernadette has been involving patients and members of the public in research for about 6 months, although as a doctor, she feels she’s always been involving them to some extent. Bernadette is now leading a James Lind Alliance priority setting partnership in rare inherited anaemias.

Background: Bernadette is a clinical and academic haemotologist. Ethnic background: White Other.

Audio & video

Bernadette trained as a doctor and specialised in haemotology. She was very interested in research, so did her PhD before becoming a clinical lecturer. Her job is half clinical practice and half research. She does research on rare forms of anaemia and has been developing a test, which will be the first in the UK to diagnose these rare disorders in a single test. She also does a lot of lab work that aims to find the genes that cause the disorders. 

Having worked as a doctor Bernadette feels she’s always involved patients in her work, including their clinical care. In the last six months she has begun to think about involving them in her research, particularly because this is a requirement of some funding bodies. She has found this difficult because the conditions she researches are so rare that no illness-specific patient groups have already been set up. So she decided to set up her own and has people coming from different places in the UK to join it. Bernadette is now leading a James Lind Alliance priority setting partnership in rare inherited anaemias.

Because illness experiences are so frustrating for patients, Bernadette thinks involvement is probably a good thing for them: ‘You’re so powerless in front of disease, so I think that’s really helpful and useful to them.’ She questioned how useful it would be to researchers, but said she could be convinced by good evidence demonstrating the difference it makes. 

As the disorders she researches are so rare, it is difficult for Bernadette to get funding for her research. She didn’t think involving patients would help with this, but she felt they could come up with other ideas for research. She believed involvement was worthwhile and is ‘genuinely willing to give it a go’. She would encourage other researchers to try and take it seriously. Even though it appears to be an extra thing they have to do, she said ‘there is a lot of mileage in it and we should, as many of us as possible, engage with it and see where it goes.’

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