Patient and public involvement in research

Nadeem

Male
Age at interview: 57

Brief outline: Nadeem has been trying to get involved as a patient and public representative in health research for about five years, but so far has been unsuccessful.

Background: Nadeem is married with two children, aged 29 and 27. He used to work in local government and now works as an assistant manager in a small retail outlet. Ethnic background: British Pakistani.

Audio & video

Nadeem is interested in becoming a patient and public (PPI) representative in health research and, despite several attempts, has been unable to get involved. He has attended a workshop about PPI and knows a bit about it, but would like to find out more about what it actually involves by talking to someone who is already doing it. He thinks the goal of PPI is to improve research by being a “critical friend” to researchers and that key skills used by representatives include patience, tolerance, a sense of humour, belief in what you’re doing and the ability to work within a professional environment. He doesn’t think getting used to the technical language that researchers use would be a problem because of his experience working in different roles in local government over the years. 

Whilst he would be grateful if the PPI role was paid, Nadeem thinks it’s important that this doesn’t result in people doing it solely for the money; they should do it because they are committed and want to contribute to the greater good. If he were to become a PPI representative, Nadeem would be interested in taking part in research on smoking because he is a smoker, diabetes because his late father was a diabetic, on bone illnesses because he used to suffer from back pain in the winter and on conditions that affect South East Asians.  

Being from an ethnic minority community, it is important to Nadeem that he isn’t involved in PPI simply because he is seen as different. He wants to be involved because of the value he can add. He feels that the reason that few people from ethnic minority backgrounds get involved as lay representatives in health research indicates a failure in the system. He also thinks there is a lack of knowledge and understanding about PPI amongst the general public and that this should be addressed by engaging with communities. He feels strongly that this should not be tokenistic and should happen on a regular basis.

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