Patient and public involvement in research

Stephen

Male
Age at interview: 18

Brief outline: Stephen has been a PPI representative and a member of a teenage and young adult clinical studies group for about nine months. He is particularly interested in cancer research since he was diagnosed with colorectal cancer when he was 15.

Background: When we interviewed him, Stephen was single and living with his parents. Sadly Stephen passed away in May 2014. Stephen became well known for his bucket list wish to raise £1 million for a cancer charity. At the time of writing he had raised over £4.3 million. Ethnic background: White/British.

Audio & video

Stephen is a member of a Teenage and Young Adult Clinical Studies Group and a Consumer Liaison Group. He has been involved in PPI in cancer research for about nine months after responding to a call for participants made by the Youth Support Coordinator at the hospital he attends for cancer treatment. After experiencing symptoms for five months, Stephen was diagnosed with colorectal cancer when he was 15. He says this delay in diagnosis is often typical because doctors do not expect to see teenagers with such serious illnesses and symptoms are overlooked or misdiagnosed. Late diagnosis is one of the key issues his PPI group focuses on. 

When he took up his position, Stephen attended a three-day training course about PPI in cancer. Here he was introduced to the jargon that might be used and what was expected of him as a lay representative. Initially the experience of being a young PPI rep was a little daunting for Stephen, but he relaxed into the role and enjoys what he does. He feels his opinion is valued by other group members, clinicians and researchers. They are all there for the same reason: “To try and improve research”. 

As a PPI rep, Stephen reviews participant information sheets, research proposals and helps researchers devise the questions they should ask in interviews or on questionnaires. He sees his role as offering a patient perspective and tailored advice on research. He thinks including PPI can lead to research becoming “more efficient, more accurate and more reliable”. He feels he can make a difference for other people by taking part in PPI and finds it quite rewarding. Some of the key messages he tries to get across to researchers are that they need to be sensitive to their participants, and provide feedback on the results. He writes a blog facebook.com/StephensStory about his experiences of cancer, and uses social networking sites to raise money for the Teenage Cancer Trust. He is an advocate for the use of social media in engaging participants in research. 

Originally Stephen wanted to become a doctor, but his long-term health is now in doubt. PPI is a way for him to help others on an even larger scale than he might have done as a doctor. He believes anyone can get involved in PPI in cancer research: “Cancer touches that many people now I think everyone could easily get involved and be good at what they do”. As he has cancer, Stephen sometimes finds his PPI work has an emotional cost. But he believes his work will lead to fewer emotional concerns for patients in the future and this outweighs all other costs.

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