Researchers' experiences of patient & public involvement

Carl

Male
Age at interview: 46

Brief outline: Carl says he has been involving patients since he went to medical school and that you can’t do research to improve patient care without involving them.

Background: Carl is a professor of evidence-based medicine and is also a GP. Ethnic background: White British.

Audio & video

Carl’s research covers many areas, but is mostly about how to improve clinical practice based on evidence. He focuses in particular on making diagnoses more accurate and on non-communicable diseases, including cancer and cardiovascular disease. He said that most of his ideas come from his GP practice and that maintaining this relationship with his patients is incredibly useful for informing what he does. In fact, he said it’s practically impossible to do research if you’re not connected to patients and he felt that it was important that research added value and made a difference to patient care. 

Despite working in evidence based medicine, Carl believes it’s important to involve patients without having evidence for the difference it makes because it’s ‘a sensible thing to do’. He said involvement makes research projects more attractive to patients as they are designed with them in mind. He doesn’t think patients who get involved need to be representative of all other patient with the same condition. He said he couldn’t represent all other GPs, so could one patient represent the rest? If researchers are concerned about having representative views, Carl suggested they could conduct a patient survey.

Carl would like patients to get involved in publicising research findings. He said, ‘They should insist that the research is communicated back to them. They should be involved in any summaries or findings… And they should also be actively contributing to what this means.’ He always feeds back to people about how they’ve made a difference in his research and thanks them for their involvement.

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