Derek has been a patient PPI representative in health research for about 13 years. He got involved after recovering from throat cancer.
Derek was diagnosed with throat cancer about twenty years ago. Around seven years later, he attended a meeting about publicising research and he asked why the researchers waited until the research had finished before they started to involve patients. After this discussion, he was invited to join a national cancer research committee. He said he had limited knowledge of science and research, but he joined because he wanted to help increase the number of cancer patients participating in clinical trials as part of their treatment. Seeing this number increase is partly what has kept him involved as a patient and public representative for the last thirteen years.
When he started doing PPI, Derek realised that other members were often patients who were also clinicians or researchers. Whilst their input is valuable, he thought it was important that patient members from other backgrounds were involved so researchers could hear what it was like for those who knew little about research. He said it was also important for PPIs to think about this issue too, so in another cancer group they included a member who didn’t have cancer. Derek and the other members of his group set up their own programme of training that included the things they wanted to learn about. This was later developed into Building Research Partnerships, a UK wide generic PPI training course that aims to bring people together so they can learn from each other. Derek thinks the generic nature of the course is one of its strengths because people shouldn’t be pigeon-holed into just working in research on one condition, and they don’t need to be trained in every aspect of research because they can access further information using the internet and apps on their smartphones.
To get involved in PPI, Derek thinks people should draw on their personal experiences, attend training and believe that this is something they can do. They should get their foot in the door and then find what aspects of research they want to be involved in. Derek also thinks PPIs shouldn’t aim to be representative of all patients, but they should stay in touch with other groups, so that what they bring to research includes the views of others.
When Derek is invited to work in research, he thinks about the context, purpose and impact of the work. He needs to know what he is being involved in, what the research needs from his involvement and what it is the work is trying to change. He also thinks it’s important to reflect on what PPI added to the research. He sees PPI as part of the quality assurance of research and understanding what it adds will lead to what he described as best quality research which can be quality marked.
Derek said that getting involved in PPI has made him a better patient because he is now more interested in his health and in health research. He thinks this is how tomorrow’s patients will be because they will know more about research and will want the care they receive to be based on evidence.