Researchers' experiences of patient & public involvement


Age at interview: 59

Brief outline: John’s primary research interest is in heart failure. He has involved patients by getting them to review information sheets and endorsing his research ideas.

Background: John is a professor of clinical cardiology. Ethnic background: White Scottish.

Audio & video

John is a cardiologist and is particularly interested in the causes, diagnosis and prevention of heart failure. He has involved patients in reviewing information sheets and has attended some patient group meetings at his hospital. He said it was difficult to find patients to involve and to keep them involved as patients with heart failure are often quite elderly and usually very sick. He also said, ‘They’re not used to being asked their opinion on medical matters’ and felt they would be easily led to telling him what they thought he’d want to hear. 

There are some issues that John felt should be decided on by the public and not by the medical community. He described having the support of a group of patients was ‘a powerful weapon’ because changes were more likely to be made on the basis that patients wanted them rather than doctors. He said it was unlikely that most patients would come up with good ideas for research, but that it was important for researchers to get them to endorse their ideas. 

John thought the ideal patients to involve would be those with ‘above average intelligence’, but this wasn’t necessarily related to the level of education they had. He said researchers probably need to educate their patient advisors, who he felt would become more valuable as they gained more experience. 

A concern John has about involvement is that it is difficult to involve a diverse range of people and he worried that those with rare conditions might be more likely to get involved and perhaps have a stronger voice than others with more common problems. He also believed that patient advisors should be paid to ensure more people from a wide range of backgrounds could get involved. But he said it was important that patients should declare any conflicts of interest, which may include advising pharmaceutical companies.

To overcome the problem of how difficult it is to find patients to involve, John suggested an online directory of interested patients and members be developed. He would also like to see that all patients entering a hospital are informed about research and how they can get involved or take part. 


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