Patient and public involvement in research

Mary

Female
Age at interview: 60

Brief outline: Mary has been involved in PPI for about 20 years. She mainly works in mental health research with local, national and international groups.

Background: Mary used to work in marketing before moving into the civil service. She currently works as a mental health service user consultant. Ethnic background: White British European.

Audio & video

Mary has a diagnosis of bipolar disorder. She had been doing a lot of voluntary work to change services as a mental health service user consultant when a friend said she could probably get paid for doing it. She used to work in market research so had a lot of skills to bring to patient and public involvement in health research. She got involved in a project, which showed her how much she enjoyed research and also how much she knew about it. She soon became known as an experienced mental health service user consultant and began to get invited to work on lots of research projects as an individual or as part of a group. She joined and later became chair of a European network of users, ex-users and survivors of psychiatry, so she has experience working in research at local, national and international levels. 

When she reviews research proposals and funding proposals, Mary considers how service users were included in the planning and design of the research, and said it’s obvious when involvement has been tokenistic. The biggest cost of her involvement is time, but she said she likes doing the paperwork because she can do from the comfort of her armchair. She doesn’t like when she has to set off early in the morning to attend meetings, especially when she has a long distance to travel to them and thinks researchers could be more considerate of how long it takes people to get to meetings when they’re deciding on the start time. 

Mary has also been a research participant before so she knows what it is like to take part in research. She sometimes hasn’t felt valued as a participant, and would like to encourage researchers to think about sharing individual and group results with participants. She also thinks that ethics committees can be patronising and over-protective when it comes to research about mental health service users, and believes people should have the right to make their own decisions about taking part in research. 

Along with colleagues, Mary was involved in developing a report showing how service user consultants should have their time recognised and rewarded. She thinks it’s very important that service user consultants are paid for their time and contribution. She has done a lot of voluntary work in the past, but tries to be paid for all the work she does now and thinks that researchers and clinicians should think about paying people when they are costing research projects. She feels cross if she’s at a meeting and she’s the only one who isn’t being paid. She said that involving service users makes research more interesting because it includes the human aspect of research. She’s proud of her experience with her illness and said, “My lived experience is very important and gives me credibility”.

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