Patient and public involvement in research

Roger B

Male
Age at interview: 67

Brief outline: Roger has been involved in health and medical research in sarcoma since he became a patient advocate in 2002. He also founded Sarcoma UK, a national charity that aims to provide information and support for patients with the condition, and raises funds for research.

Background: Roger is married and has three daughters, aged 37, 35 and 28, and four grandsons. He is a former television producer and journalist, and has worked as a consultant with pharmaceutical companies and in education. Ethnic background: White British.

Audio & video

After Roger was diagnosed with sarcoma, a rare type of cancer, he contacted the National Cancer Research Institute (NCRI) which was advertising for patient members for a clinical studies group. At his first meeting, he remembers feeling a little nervous and daunted by the professional researchers and clinicians around the table. Early on, he learned how important it was that meetings were chaired well. He explained that the chairperson needs to control the topics being discussed and ensure that everyone has a say. Even now before he attends a meeting, Roger will speak to the chair and tell them in advance what he would like to contribute. He said this is important because it means he doesn’t have to fight his way into the discussion with the professionals.

Since joining his first group, Roger has been a patient advocate on several other groups and is involved in research across Europe. He said research teams are about partnerships between various types of researchers and clinicians, and including a patient in these groups is just common sense; “it makes you wonder why it should ever been seen as unusual”. He believes patients can make professionals think twice about things they may not even have questioned before, but they need to try to be as representative as they can without losing “their own specific patientness”, which he thinks is very valuable. Roger suggested they could keep in touch with how others think and feel by remaining in contact with patient groups. 

Over the years Roger’s PPI role has changed. Initially he was involved in reviewing studies, making sure participant information sheets were clearly written and easy to understand, and offering his opinion on the usefulness of proposed research projects. He has worked on the training courses run by the NCRI Consumer Liaison Group, which aim to improve patient understanding of drug trials by helping researchers and clinicians to think about how best to give information to patients in a way they will understand. Whilst he still does these kinds of things, Roger has become more involved at a strategic level, taking part in debates and discussions about the major issues of direction and management, including the development of PPI. He is keen to promote openness and transparency in research, which includes ensuring that all research findings are published regardless of their findings. He has been appointed as a scientific member of the NCRI, a title usually reserved for researchers and clinicians and thought this might be an acknowledgement of the work he has done over the years with the NCRI and also with Sarcoma UK, the national charity he founded that aims to contribute to research funding. 

Although he has been involved in health research for over a decade, Roger still enjoys being a patient advocate. He said the experience has been rewarding and that he’s humbled by the prospect of making a difference in sarcoma research. Although it has been challenging and scary, patient and public involvement can be very satisfying and he thinks other people should get involved. He also encouraged researchers to use patients in their research, saying they’d never regret it.

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