Patient and public involvement in research

Messages to professional health researchers

We invited the people we spoke to to give messages to professional researchers about involving people in research. Given that the relationship with researchers sits at the heart of all involvement, these messages feature across the whole site. Here we draw together a few key themes that came up repeatedly. The main message was to encourage professionals to try involving patients and members of the public in their research and discover the different perspectives it can add. Dave X said ‘Each patient is an expert in his own field, on himself and what he’s been through, which is something you as a researcher won’t have. So it’s an on-tap resource. Use us please.’ 

Patient and public involvement is becoming something researchers are increasingly expected to do; it’s part of how research is conducted and is often necessary for researchers to successfully attract funding for their work. But people wanted to remind researchers that it shouldn’t be seen as a box-ticking exercise if they wanted to get the best out of it and use it to enrich their research. They advised researchers to involve people in the early stages of designing research and engage with them throughout the whole research process. Dave A felt it was also important for researchers to learn from what doesn’t work to improve how they involve people in future.
People also encouraged researchers to think flexibly about how to involve people, to make involvement roles easy for patients and the public to do, and to treat them well. Researchers were advised to think about how people want their role to be described and Francesco thought researchers should ask people what they wanted to be called rather than giving them a title. But people also understood that researchers might not know how to involve patients and members of the public, and that they may be nervous or fearful about doing so. They encouraged them to be open-minded, to get training and not to get too hung up on whether the people they involve are representative of other patients; they just need to start somewhere.
Professionals were also encouraged to think about ways to involve people from ‘seldom heard’ groups. These include people with a variety of experiences from different backgrounds – ethnicities, social status, age, disability status. To do this, they encouraged researchers to think about paying people for their time, and reimbursing their costs. It was also important that researchers think about how they find the people they involve and people suggested using social media, like Twitter and Facebook.
People felt that they as individuals should be given feedback about the difference their involvement has made. They wanted researchers to feel they could be honest with them and that they shouldn’t be patronising. It irritates Carolyn when researchers overdo it with their praise in meetings – they should be able to be honest and critical. She described involvement as ‘grown-up enough to have that kind of discussion’. But people also wanted to hear if and how their involvement had made a difference to research.
They also felt strongly that the results of all research projects should be made public for researchers, clinicians and patients alike. Stephen mentioned the All Trials Campaign, a campaign started by Richard and leading clinicians and researchers, which aims to ensure all results (positive and negative) from trials are published. But when it comes to communicating with the public and reporting research, people felt professionals needed to use simple, plain language and avoid abbreviations or complicated terms.
Finally, lay people who get involved in research are often passionate and excited about it and could be seen as ambassadors who can support researchers in spreading the word, so more patients know about research and think about taking part.

Last reviewed July 2017.


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