Patient and public involvement in research

Dave A

Male
Age at interview: 60

Brief outline: Dave became involved in PPI after his parents were both diagnosed with cancer. He works with various PPI groups at local and national level. He primarily works in lung cancer research.

Background: Dave is married and has one grown up child. He is a retired science teacher. Ethnic background: White.

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When Dave’s father died of lung cancer, his friend told him about a local conference that was being run by a group of people involved in cancer research. It was the first time he had heard that patients and carers were being included in research in that way. He decided to join that local group, and over the last nine years has been rapidly drawn in to PPI in lung cancer research at local and national levels. He finds there is great value to being involved at both levels; he can discuss national issues with the local group and represent all members when he reports back, rather than just providing his own opinion. 

Over the years, Dave’s involvement has included tasks such as reviewing research proposals, developing protocols for clinical trials and regularly presenting research results. He feels there is a lack of understanding about research among the general public, so when people are invited to participate in studies, researchers have to spend a lot of time explaining the process to them. He would like to increase public understanding and thinks this could be achieved through televised documentaries focusing on the subject. 

During his nine-year involvement, Dave has seen both subtle and profound changes occurring in PPI. Lay people are more accepted than before and professionals expect to involve them. Whilst some professionals can be difficult to communicate with, Dave has always found those working in palliative care to be very attentive and interested to hear what he has to say. He thinks this may be because a key part of their job is listening to patients, a skill they carry this over to PPI. 

Whilst it is difficult to capture the precise impact that PPI has had on health research, Dave has noticed a shift in priorities as a result of involving patients. There have been changes in the breadth of research within cancer that he believes are the result of patient involvement, from issues surrounding prevention, early detection, and cancer awareness, to end of life care. Now that patients and members of the public have been involved in health research for about ten years, Dave thinks it is time to consider the aspects of PPI that aren’t working well. Lay people are well represented on committees throughout the world of cancer research, but few tend to be involved at the early stages of developing research. He would like to see lay members sitting on all trial management groups. He also thinks the issue of payment for PPI needs to be addressed. Currently, certain social groups are difficult to include because no payment (other than reimbursement of expenses) is offered. He is frustrated that people’s Benefits may be affected and thinks the government should make changes to allow hard to reach groups to have a voice in PPI. 

Dave says there are benefits to taking part in PPI including feeling good about your ability to give back and making a difference for other people. Having his opinion valued is important and has made him feel good about himself. He has met people he wouldn’t have otherwise and has made some good friends. He thinks everyone has a contribution to make in PPI and encourages others to get involved.

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