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.
Patients can probably be involved in all types of research and they will make a positive difference.
It’s important that patients are included in all cancer trials throughout the UK. But we need to start thinking about what aspects of involvement aren’t working and learning lessons for the future.
Involve people early on; your research may benefit in unexpected ways.
Helena thinks user-researchers can play a role in bridging the gap and helping more researchers to get’ why their research can be better with involvement.
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.
A good chair (lay or professional) will encourage everyone to contribute but without pushing them.
Mary said researchers shouldn’t be afraid to involve people. Even though she has a mental health problem, they don’t need to wrap her in cotton wool.
Margaret advises researchers to make a start with any patients they come across.
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.
Not offering payment excludes some groups of people. But the government needs to address the problem of it affecting their benefits.
Researchers need to put resources in place to support more diverse involvement and think creatively where to find people. Adverts in the Big Issue and using social media might help.
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.
Marney receives feedback on how she has made a difference to research.
Helen doesn’t know if her involvement has made a difference. If people don’t get feedback on how they’ve contributed they may not feel motivated to continue.
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.
Researchers need to think about the language they use when presenting information to lay people. They should also provide a lay summary of the study results and acknowledge what lay people have added.
Research often shows there is a need for more information, but producing a leaflet isn’t enough. People also need verbal information.
Researchers spend too much time making up trial acronyms which patients may find patronising or silly. They should aim for a nice title that people will understand.
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.