Researchers' experiences of patient & public involvement

Vanessa

Female
Age at interview: 42

Brief outline: Vanessa manages the charity and is responsible for delivering their vision for transforming mental health research by championing the role of experts by experience. Vanessa has been involving patients and members of the public in her research for about 15 years.

Background: Vanessa is a research director of the McPin Foundation, a mental health charity she founded with her husband. Ethnic background: White British.

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Vanessa was an academic mental health services researcher before starting a mental health research charity with her husband called the McPin Foundation. Her interest in mental health stems from experiences at University as an under graduate and in her family, inspiring her to undertake a PhD with mental health service users and progress a career in both university research and within the mental health charity sector. Her charity aims to promote and advise on how to effectively involve “patients and the public” in research. They deliver research and evaluation projects, help others to deliver quality research studies and work in partnership to influence the mental health research sector. 

The McPin Foundation involves people who have lived experience of mental health problems either, service users or their carers/family members, in all their work, from thinking of research questions, reviewing study ideas and protocols, collecting and analysing data, and writing up the findings. The service users are often employed as peer researchers and Vanessa explained that it was important that they aren’t treated differently or highlighted as being different from researchers who aren’t service users. It is also important to her that they are paid, so she ensures she keeps up to date with and seeks advice from experts on how to involve people who are on benefits. She also said it is important that anyone who gets involved is informed about the possible implications for their benefits. 

Vanessa believes peer researchers have a big impact on research. She said when they interview people who have a shared experience she has seen what she described as the ‘subtle’ and ‘very, very explicit’ ways in which it makes a difference. She said it was important to try and capture these and in their next large scale programme of research, they are going to keep a record of how project partners feel peer researchers and service users have made a difference. 

Involving service users in research can have emotional consequences. Vanessa explained that it causes her to worry because there might be serious personal consequences for individuals if getting involved contributes to a mental health crisis. She also said that they’re asking people to share their personal experiences in research, which can be difficult and requires careful consideration and support. 

Vanessa said that patient and public involvement is at an important point in its development, and that she feels it has a lot more potential. She would like to see more networks being developed so that everyone can share information and experiences about involvement and she said that the McPin Foundation was keen to work with others in this way.

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