A sound approach to public involvement is vital for successful research, its long-term impact and future funding. Use existing knowledge about how to include public and patient perspectives in your research, recommends Martin Lodemore of NIHR’s Involve.
About 15 years ago, an international conference into rheumatoid arthritis invited, for the first time, people living with the condition. Having looked over the research, the patients drew attention to the researchers’ focus on pain. “We have tablets for pain relief,” they protested. “The bigger issue for us is our struggle with fatigue.”
As a result, the conference organised a multinational survey which confirmed that fatigue was more of an issue than pain for many people with rheumatoid arthritis. An international agreement was enacted requiring that all clinical trials on the condition should measure fatigue levels. The patients’ voice made a huge difference, and continues to do so through a researcher-public partnership that is also looking at sleep disturbance.
Reasons for involving patients and public
Involving patients in research does not only pay dividends in terms of advancing knowledge. It can be vital for getting trials off the ground. Some years ago, a proposed diabetes study needed participants to have a dozen upper leg punch biopsies in a year to measure glucose uptake in the muscle. It was only when people with diabetes were asked to review the plans that the research team – so focussed on the usefulness of the science – recognised that such gruelling tests would put off potential participants. The research team restructured the study, potentially saving a great deal of time and money.
These are just some of the numerous examples showing how patient and public involvement in research can make the difference between success and failure. These voices can improve the quality and relevance of the research, as well the likelihood of successfully recruiting and retaining participants.
Involvement is also a moral imperative. Most research is publicly funded, whether via taxation or charitable donation, so the public should be consulted. That’s one reason why the National Institute for Health Research (NIHR) has made public involvement a funding requirement. It’s also needed to gain ethical permission for a study – and public scrutiny is now part of the Research Excellence Framework’s assessment of impact.
Getting it right
Achieving appropriate involvement is not always easy. Researchers sometimes just go back to the patients they know, perhaps middle-aged, middle class people with time on their hands. That’s not to denigrate the input those people have had over the years. However, public and patient input can sometimes lack diversity and involvement may not offer a broad perspective. Key insights may be missed from those who are not included: studies sometimes fail to engage people of working age and from seldom heard communities, such as some ethnic minorities, people living in rural areas as well as older and younger people. Getting the right mix can require time, resources and commitment.
There’s a hot debate about whether studies should consult generic groups of patients or those with experience of specific conditions such as cancer, mental illness or diabetes. Some say that it’s worth the effort to reach those with specialist knowledge who can bring extra insights that may escape a generic patient group. But is there evidence to support this?
Another question, which is being addressed more successfully now through groups such as Generation-R, is how to involve young people – and children in particular. Those working with children’s groups often recommend that children should be consulted directly, where possible. Sometimes, researchers will ask parents or guardians for a child’s view, but they aren’t always the best guide.
I was involved in one project which consulted people with Type 1 diabetes about whether, theoretically, they would find it acceptable to test a treatment that had the potential to cure their condition, but which carried a 10 per cent risk of very serious side effects. The parents of one 10-year-old boy with Type 1 diabetes were firmly confident that he would not take the risk. But, when we asked the boy, with his parents present, he felt the one-in-ten risk was small for such a large gain, and that he would probably go ahead. His mother could not believe what he said and his clear rationale.
Making payments to those involved
Payment for those actively involved in research is another tricky area which lacks an agreed approach. Some organisations do not offer payment for people’s time, while those that do often struggle with institutional processes that are complex and sometimes off-putting to the public. Local policies and processes often vary, both between and within organisations. One institution surveyed its research teams and found 36 different ways of paying the public.
INVOLVE recommends that people should have the option to be paid for their participation – not merely be offered their expenses. Payment can widen the diversity of those getting involved. Making it optional accommodates both those who wish to take part as a volunteer and those who couldn’t afford to join if they weren’t compensated.
Supporting the public and patients who get involved in research is vital. Public contributors should receive a clear description of their role, including information on expenses and payments, and be offered opportunities to learn and develop skills that help them in their role. So, for example, someone joining a study steering committee, and who has no experience of procedures, might benefit from advice on how the agenda works, who is in charge, the protocol for asking a question or for contributing their viewpoint. Similarly, they might be offered a mentor to support them before, during and after a meeting. Opportunities to learn and develop knowledge about a particular condition might also help, by arranging attendance at seminars or conferences on the topic. Members of the public may also be helped with public speaking or presentation skills, especially if they are asked to help to disseminate findings.
Support for public involvement managers
Additionally, we’re aware that public involvement managers may not come to the role with all the skills needed for this varied role. A little training would be appreciated to help them with skills to bridge the gap between the research community and the public.
All of these issues apply to public health research, though they are not particular to it. One of the big challenges for public health is ensuring that its messages and concerns speak to non-professional people. As in other areas of research, terminology can get in the way. For instance, you may talk to people about the dangers of the obesity epidemic, but even if individuals have a weight problem, they might not think that this message is relevant to them. A diabetes team that I once worked with did an outreach programme, raising public awareness about the benefits of clinical research. People walked past us. As soon as we mentioned diabetes, people were interested because everyone knows someone with the condition.
There are numerous ways in which you can involve the public, some of which work, and some of which can fail to engage or get useful perspectives from those involved. So here are my ten top tips.
10 top tips
- Engage honestly – Be clear about what you are trying to achieve and what you are asking people to do.
- Support participants – Make sure people feel part of the team and are adequately supported throughout their involvement.
- Plan ahead – Think strategically about how people might be involved and what they will do to help design and deliver your research.
- Get the finances right – Make sure you know how and what you will be paying those involved, how you will fund the support they will need, and whether you have adequate team capacity to coordinate the involvement.
- Canvas a wide range of views – Where appropriate, look for a wide range of people from different communities and from a broad demographic.
- Allow enough time – It takes time and effort to get the process right, so don’t underestimate this when planning and budgeting.
- Keep people informed – Ensure that those involved know what is happening. Offer progress reports, even when there may be little to report.
- Feed back throughout – Tell people what difference their involvement made, and what changed as a result of their contributions. If you don’t, people won’t bother to respond, or to get involved with you or others in the future.
- Evaluate the impact of involvement – Case studies that explain how people contributed to your research and what difference their input made can help others to learn about what works and how it can benefit their research.
- Ask for help – Some people feel uncomfortable taking their first step into public involvement – even some public involvement managers can feel uncertain and isolated in their roles when they first start. There are lots of people out there with experience, so use their knowledge for your study.
Martin Lodemore is one of the Senior Public Involvement Managers at INVOLVE, NIHR’s national advisory group that supports and promotes active public involvement in NHS, public health and social care research. www.involve.nihr.ac.uk
Martin will be leading a seminar on Public and Patient Involvement on 6th March 2017 at 12.45pm in Room Jerry Morris B, LSHTM, 15-17 Tavistock Place London WC1H 9SH. No reservation necessary.