Patient and public involvement in research

Tom

Male
Age at interview: 68

Brief outline: Tom became a consumer representative and started doing PPI about fifteen years ago. He works with numerous organisations, committees and groups in both health and medical research, and service delivery. His main research interest is in lung cancer, but he also contributes to research in other types of cancer.

Background: Tom lives with his wife. He is retired but formerly worked as an electrical engineers. Ethnic background: White Scottish.

Audio & video

Tom’s interest in consumer involvement began after he was diagnosed with lung cancer. He took part in a clinical trial because doctors thought the other treatments available at the time would not have worked for his illness. Afterwards he was medically retired from his job and wanted to find something that he could spend his time doing. Tom had thought about his experience and wanted to translate it into research but didn’t know how. He was sent a letter from his consultant asking him whether he would like to meet with representatives and other patients from a lung cancer charity who wanted to start up a patient support group. He decided to join this local patient support group which started his career in consumer involvement. 

His first serious involvement in cancer research was with the National Cancer Research Institute (NCRI) where he was asked to join the strategic planning group to produce a report on lung cancer research. Since he joined the NCRI, he feels he has built up his involvement in various aspects of the research process at local, national and international levels. As well as being asked to sit on a number of consumer groups he was invited to be a co-applicant on a research proposal. Tom believes in the importance of having the patient perspective built into the research project. His PPI role has also involved sitting on trial steering committees, presentations, commenting on proposals, radio and TV interviews, newspaper articles and reviewing patient information sheets and consent forms. Tom feels it is difficult for consumer members to provide a ‘representative’ perspective. He feels he brings his own views to the table and not those of other patients. 

Over the years, Tom has seen significant changes to the level of consumer involvement in research. Researchers are now expected to involve consumers from the early stages of and throughout the research. He acknowledges that there may still instances where consumer involvement may be seen as tokenistic but feels that his contributions have been valued and has often found that researchers are extremely engaging and seek his opinion. Tom thinks that there are still challenges that need to be addressed in consumer involvement, which include increasing the involvement of minority ethnic groups and other hard to reach groups. He feels that if he “can help one patient have an extended life expectancy or a better quality of life for the time they've got” that would make him content. Tom would like to encourage other patients to become involved as he feels that consumer involvement is a positive and enjoyable experience.

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