Patient and public involvement in research


Age at interview: 71

Brief outline: Charles has been involved in patient and public involvement in health research for about three years. The majority of his involvement has been in orthopaedic research.

Background: Charles is married and has two grown-up children, aged 44 and 42. He is retired from his job as a research manager. Ethnic background: White British.

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Charles’s retirement plans changed when his wife developed some health problems. She required serious spinal surgery and later developed memory problems, which meant they had to re-evaluate their plans. When she was in hospital, Charles heard about opportunities for people to get involved in research as lay representatives. He was invited to join a local PPI group after a chance meeting with a former colleague’s wife, who chairs the group. 

Since becoming involved in PPI in health research, Charles has been commenting on proposals and writing participant information sheets for research projects. Accurately representing the research requires quite a bit of skill and it is important to get this right as the information sheet is vital for recruiting participants. He is becoming more and more involved in different aspects of health research and has recently been invited to join the James Lind Alliance, which aims to suggest priorities for research. 

Charles believes the goal of PPI is to support the NHS, and guide and improve service development and delivery. He thinks it is important to measure the impact of PPI and suggested this could be achieved by indicating what changes have been made as a result of public and patient input. But care needs to be taken to ensure it is captured accurately. Understanding impact will help identify what is going well and what needs to be improved. Assessing the impact of PPI should aim to set standards rather than create regulations. 

There are personal benefits to be gained from being involved in PPI and Charles feels he gets a lot from what he does. He finds working with bright people enjoyable and satisfying; he gains knowledge that can be beneficial to his family’s health; and he has found another way to spend his retirement. He thinks anyone can contribute, even people who are strongly critical. To take part, people need free time to devote to it, and an interest in how the health service is run and how care is delivered. He would like researchers to be open-minded to the potential benefits of PPI.


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