Researchers' experiences of patient & public involvement

Andy

Male
Age at interview: 49

Brief outline: Andy is responsible for patient and public involvement in research. He also conducts related academic work. He has been involving patients and members of the public in for approximately eight years.

Background: At the time of interview, Andy worked with one of the Collaborations for Leadership in Applied Health Research and Care (CLAHRC). But he is now an Associate Professor of Patient and Public Involvement at a different university. Ethnic background: White English.

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When he was interviewed, Andy was working with one of the Collaborations for Leadership in Applied Health Research and Care (CLAHRC). The CLAHRCs are partnerships between researchers and NHS trusts, which aim to carry out research that will make a difference to patients and to healthcare. Andy was employed to develop a patient and public involvement (PPI) strategy. In his role he runs the PPI in the CLAHRC, advises researchers on how to involve people and writes academic publications on involvement. When he started, he set up a PPI group to advise on the running of the CLAHRC as well as other groups that were related to the different research projects that were being carried out. 

Andy defined involvement as actively working with patients and members of the public in doing research rather than as participants in or subjects of the research. He believes that PPI has a number of purposes and that it’s a mistake to assume everyone is doing it for the same reason. But he said that all involvement is likely to share a common goal of improving health research, leading to improved healthcare. 

However, Andy thinks that involvement is becoming more bureaucratic and complicate. He said there was a perception that it is common sense, something that any academic should be able to do. But researchers require a certain set of skills to involve patients. They should be good at facilitating group discussions and making sure no one is left out, and good at listening and interpreting what is important to people. 

Andy believes that people who get involved don’t need to be representative of the rest of the population or of all other patients who have the same condition. They just need to be able to share their experiences. He also said there was no problem with people being involved for a long time because understanding and developing skills in research doesn’t take away people’s illnesses or their experience of living through it. In fact, he believed that the experience and expertise people develop over time will make them feel more confident in their ability to challenge and contribute to the discussion with researchers. 

In order to assess the impact of involvement, Andy said it was important that what is meant by involvement is made clear because ‘if you’re not clear what your PPI is meant to do then how are you going to know if it did it or not?’ He also explained that if involvement isn’t well supported then it’s not going to look like it has much of an impact on research. He believes it helps researchers ensure they are addressing the issues that are most important to patients.

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