Patient and public involvement in research

What activities and tasks are involved?

A key message from people we spoke to is that involvement can be as much or as little as you want it to be (see also ‘Types of involvement’). They described a range of activities and tasks, most commonly attending meetings to give a patient, family or public perspective, and commenting on documents.
 
People who are asked to take part in health research are first given a ‘participant information sheet’ as part of the consent process, so they understand what the study is about and what will happen to them if they take part. All such leaflets are checked by a research ethics committee before a study is allowed to start. It is vital that these leaflets are clear and easily understandable, so being asked to comment on how they are worded is one of the most common ways for people to get involved. However, Helena argued that this could just as easily be done by a communications professional. Many research funders also ask researchers to include a ‘lay summary’ (an ‘easy to understand’ explanation of their research) in their research proposal, and helping write the lay summary is another common form of involvement.
Getting the wording right is just one aspect of commenting on patient information leaflets; design and layout are also important.
As well as advising on information sheets or certain sections of a research proposal, people may be asked to review the whole proposal. This may be to help researchers improve it to make it fit better with the lived experience of those likely to participate in a study before they submit it to try to get funding, or it may be to help a funding organisation decide whether it is worth funding. Several people offered practical advice on how to read documents critically.
The amount of reading people did varied, but Marney pointed out it could be quite a lot. When people are asked to review research proposals, they may send in written comments; for Marney this was easier following her stroke than attending meetings. But people may also be part of a panel which meets to discuss all the proposals and decide which to fund. Attending various kinds of meeting was a common activity. Some people got involved in ‘trial steering committees’, groups of researchers and lay people which meet regularly to oversee the running of a particular clinical trial. Some were involved in ‘clinical studies groups’, which take an overview of research in a particular condition such as stroke or cancer. For some people, such as Margaret, their involvement had spread from local research to national and international committees and conferences, speaking about research to raise public awareness, and speaking about what patient and public involvement can offer. Becoming a lay chair of a committee was another form of involvement.
Not everyone feels comfortable reading lots of documentation or attending formal meetings. Kath felt it was important for researchers to find other, less formal ways to involve people, which might include group meetings in the community to gather a range of views. Andrew agreed that not everyone will want to do a lot of reading or work closely with researchers. As Kath said, it’s important that researchers are creative and flexible in how they involve people and that people are aware of involvement opportunities.
Another key task is helping to set priorities for research – identifying questions that patients and families want answered – and designing new research studies. Some of this may be done through the kind of national committees and clinical studies groups described above. Maxine and Charles had also got involved in ‘Priority Setting Partnerships’ with the James Lind Alliance. A Priority Setting Partnership is a process for bringing together clinicians and patients to pull together all the unanswered questions on a particular topic or condition, and then agree the ‘top 10’ to be recommended for future research.
As well as advising on research, people may get involved at various points in actually doing the research. This can include helping recruit people to take part in studies; collecting data (for example through surveys, focus groups or interviews); helping to analyse the data; writing up and disseminating the findings.
Maxine, Mary, Rosie, Anne and others had got involved in writing academic articles with researcher colleagues.
Finally, people may get involved in promoting the whole idea of research and raising awareness.
See also:
Types of Involvement
Skills and background for involvement
The value and impact of patient and public involvement in research

Last reviewed July 2017.

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