When planning research, it is fairly standard to have to think about how patients or other key groups (such as carers) can be actively involved in its design and delivery. As a principle of good research design it makes obvious sense. Based on their experiences, patients can give valuable insight into a range of issues, such as the content of participant materials and how the research itself should be conducted.
Aside from the potential benefits of the patient perspective, it is often a condition of research grants that patient and public involvement in research is formalised. It is also something that has to be addressed when applying for NHS research ethics approval. However, good quality patient and public participation in research is not necessarily easy to achieve, and the challenges can affect researchers’ willingness to fully engage with the idea.
Three challenges of patient and public involvement in research:
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At a basic level, researchers may simply not want to take on board ideas from ‘outsiders’. For researchers with years of training and experience, they may question why they should listen to people who they don’t see as having the same level of expertise as them. If they are obliged to involve patients in research to meet funding/ethical requirements, it can end up being purely tokenistic as a result.
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Patients’ motives for wanting to be part of the research may differ from the typically targeted focus of a project (for instance, personal experiences may lead them to focus exclusively on a certain angle of the wider research area) which can limit the usefulness of their contribution.
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More practically, research is often time and budget limited, and this can mean patient or public involvement is an afterthought to satisfy grant review boards rather than something embedded in the research development.
What can patient involvement in research look like?
Although there are challenges of patient and wider group involvement in research, there are often clearly identifiable benefits. At the Nuffield Trust, we are undertaking an evaluation funded by the Stroke Association to look at the impact of the peer support delivered by Stroke Association Voluntary Groups on stroke survivors and carers. We are collecting self-reported data from stroke survivors and carers about their health and well-being in the form of a questionnaire, as well as carrying out interviews and focus groups to learn what it is like to be part of a voluntary group.
At an early stage it was clear that involving stroke survivors, carers and volunteers in the research process would be of great value, since the research design needed to be sensitive to the needs of stroke survivors. Approximately a third of stroke survivors are affected by aphasia (communication difficulties), which meant that the accessibility of participant materials was particularly important.
Preparing for stroke survivor and carer involvement in research
In order to allow effective stroke survivor involvement, we began by undertaking specific training offered by the Stroke Association about aphasia and communication difficulties associated with stroke. We also found some resources produced by the National Institute for Health Research Clinical Research Network Stroke about including people with aphasia in research, which we used to refine our project materials.
This was an important pre-step as it gave us a starting point for what to consider when developing the participant materials, and meant that when we asked stroke survivors and carers to comment they (hopefully) did not have to correct basic problems and so we were able to make the best possible use of their time.
Forming a project advisory group
The next step taken was to form a project advisory group where stroke survivors, carers, and volunteers would be represented. We also invited academic experts with experience conducting stroke research to join the group, as well as members of the Stroke Association evaluation team.
We have so far held two meetings of the advisory group, which we used to shape the research design. What was clear from the meetings was that there was great value in people with experience of stroke highlighting some of the practical issues about carrying out research in this area and how they might be overcome. For instance, what was a good length for a questionnaire for stroke survivors, and what practicalities needed to be considered when interviewing stroke survivors?
How can we judge if patient involvement in research has been a success?
At the most basic level, we will discuss with the advisory group members at the final meeting whether they think the group has been useful and how we could perhaps enhance the role of such groups in future work. It will also be important to reflect on the long term legacy of the project. How it impacts on future internal evaluations undertaken by the Stroke Association will also be a potential marker of success, so we will also ask the evaluation staff to give feedback on their experience and the impact they feel it may have on their future work.
Ultimately, patient and public involvement in research occurs at many levels. Even though we tried to actively incorporate ideas and feedback from stroke survivors and wider groups, in some research projects patients are involved in practical data collection. I think what is key is to accept and actively embrace wider involvement in research but to think how it can be undertaken in a meaningful way. This has practical advantages as well as encouraging researchers to be flexible in their approach, which in itself can spark new ideas.
The final report for the Stroke Association peer support project evaluation was published in July 2016.