Patient and public involvement in research


Age at interview: 69

Brief outline: Carolyn started doing patient and public involvement about 10 years ago after being diagnosed with breast cancer. Recent recurrences have kept her in touch with patient concerns and treatment developments. She initially worked to improve service provision before moving into working on health research.

Background: Carolyn has four children, including two step-children, aged 25, 26, 32 and 35. She worked in careers psychology and has retired from her job as Director of Career Development at a large English university. Ethnic background: White Irish.

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Carolyn became involved in PPI after she was diagnosed with breast cancer. She described herself as the kind of patient who likes to find out information about her condition. After searching the internet for information, she was struck by how common breast cancer was and wondered why more wasn’t being done to prevent it. She wanted to “make something good out of something bad”, so began to do PPI in improving health services before working on health research. The first research project she was involved in was a pilot study that aimed to evaluate cancer research panels, each of which took a different style when it came to consumer or patient involvement. After this, she started attending a national cancer research group, which is where she learned a lot about what was going on in the research world. The research Carolyn is currently involved in is about quality of life in people who’ve survived cancer. She thinks this is important because more and more people are living with and beyond it, so it’s important to ensure that the issues important to them are thought about.

From the early stages of her involvement Carolyn received training in understanding research and doing PPI. However, she noticed that researchers weren’t being educated in how to involve patients, so she and a colleague offered to organise a masterclass on involvement for them. This proved to be very successful and they received positive feedback. The researchers said it made them feel more confident, enabled them to do more effective PPI and to involve patients at earlier stages in the research cycle.

Carolyn thinks PPI is about improving research outcomes for patients and making sure that research is relevant and important to patients. She said it keeps researchers grounded and informed about what the everyday reality of living with cancer is like. She thinks it is important to understand the impact of PPI because that will ensure there continues to be a place for it in research. But because some of the impact is invisible, like if a patient changes a researcher’s attitude, for example, it is difficult to measure and Carolyn suggested that the best way of capturing it might be to interview people. 

One of the things Carolyn said has kept her involved for so many years is that she feels she’s being taken seriously. She believes that having a respectful attitude towards patients and ensuring there is funding for PPI are important in involving people from different backgrounds. Carolyn also said that patient and public involvement in health research was different from a job because you have to set your own limits and learn to say ‘no’ without feeling guilty and like you’ve let the researchers down. She also said there were a lot of benefits to being involved, especially feeling like she’s got a role and is doing something important. Carolyn thinks it’s important that new people are encouraged to get involved in research. She advises others to think about what they can offer and to discuss this with researchers. She would encourage researchers to think of PPI as a conversation and not a ‘them and us’ situation.


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