Academics in health research in the UK are now required to involve members of the public in designing and shaping their research, as well inviting them to be trial participants. Members of the public (also known as patients, service users, lay members, Patient and Public Involvement (PPI) representatives, contributors, and advisers) can be part of the research team and their involvement can increase the research’s relevance.
PPI members can advise on research priorities, create user-friendly research documents and increase recruitment. Some members of the public even carry out research interviews, help to analyse data and disseminate findings. As a result, the roles and relationships between researchers and the public are becoming much closer.
Over the past 10 years, PPI has slowly become part of our research culture. Members of the public give up their time to comment or contribute to research studies and the important contribution that public involvement can make to research is widely accepted. Those individuals are motivated and interested in research and, therefore, it is not surprising that they want to know the results and outcomes of the research that they’ve contributed to.
However, despite the first reports of researchers failing to feed back to PPI contributors being made more than 10 years ago, routine feedback rarely occurs. PPI contributors often do not know if their comments were received, were useful, or whether they had an impact on the research. This is a source of frustration.
Our recent National Institute for Health Research-funded study found that one in five members of the public never received any feedback about their comments. One individual described being involved in 13 studies and not receiving any feedback on the last five of them.
Feedback happens in all other aspects of life – including work and retail – so why not in health research? People like to hear if their contribution was useful and know that their time wasn’t wasted. Furthermore, the importance of feeding back has implications for other areas beyond health research.
Indeed, we already have a similar model with business where we are developing industrial PhDs with companies in the life sciences sector. The PhD associates spend a year working in the company, managing research projects and getting continual input into how their research is meeting the needs of the company. The company gets to feed back into the PhD associate’s research and, in return, the PhD associate benefits from a research project that has direct relevance and impact in the sector that it’s intended for. Ultimately, the sector benefits from bespoke research that’s being shaped by feedback at each stage of the process.
The problem in health research is that feedback can mean different things to different people; feedback can simply mean a “thank you” or “an acknowledgement”. For some individuals, it can mean knowing if the study received the funding to go ahead, while for others feedback can mean knowing if their comments have made a difference to the research.
So, what prevents researchers from feeding back? Researchers have time and budget constraints, are often on short-term contracts, and may not be working on the study after the results are analysed. Researchers might not know that feedback is expected and they could lack communication skills or fear upsetting people if their comments are not used.
However, there are many benefits for researchers when they do provide feedback; it improves their research practice by helping them to reflect on the involvement of the public, and by routinely documenting impact (as required by the research excellence framework assessment and funding bodies), strengthens the patient and public involvement evidence base.
Evidence suggests that good communication and reciprocal relationships are key when involving the public in research. Feedback keeps people motivated for future involvement. Members of the public also gain confidence and say that feedback improves their learning and development.
Researchers can improve their feedback by discussing expectations early on and include opportunities for feeding back in their study timeline. Within every team, there needs to be someone dedicated to patient and public involvement, and a sufficient budget.
There is no generic way to provide feedback; ideally there should be a continual feedback loop. We have guidance for researchers on the who, what, why, when and how of giving feedback, but we know that written guidance cannot replace face-to-face communication.
At the University of Hertfordshire, we have the long-standing Public Involvement in Research Group, who were involved in our recent study. Diane Munday, a lay member on the group (and co-author on the paper), has been involved in health research for 15 years. She “really values the feedback she’s been given on her contributions” but concedes that “sadly this has not always been forthcoming”.
Not giving feedback to those involved may mean that we will lose valuable members of the public who are dedicated to research and improving the healthcare experience for other people. We owe it to those involved to be respectful and give something back.
Elspeth Mathie is a senior research fellow in the Centre for Research in Primary and Community Care at the University of Hertfordshire.
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