HRA Public Involvement Lead Jim Elliott blogs about how the HRA’s new shared, strong commitment – a pledge we have made with 12 other influential health leaders - can help to fully embed patient and public involvement in research and why it matters.
Jim Elliott, Public Involvement Lead
Today’s announcement by major UK organisations that fund, support and regulate health and social care research to commit to the involvement of patients and the public in health and social care research is a very significant moment for everyone with an interest in that research and how it improves our health and wellbeing. It has been a long time coming and along with the UK Standards for Public Involvement, launched four years ago, it provides the springboard to put patients first in all health and social care research across the UK and make it usual practice.
The NHS’s first Director of Research and Development, Professor Sir Michael Peckham, introduced the concept of health research being planned and carried out with people who have relevant lived experience of what is being investigated in 1996. Public involvement has come a long way since then and grown steadily across most areas of health and social care research, including preclinical and basic scientific research. Many people felt that it had become well embedded and would soon be usual practice everywhere.
However, the emergence of the COVID-19 pandemic in 2020 revealed that it was seen as of more of a ‘nice to have’ than essential. In their urgency to set up studies to address COVID-19, the proportion of researchers who involved the public dropped from around 80% to 20%. The Health Research Authority worked with partners across the UK research system to address this in a number of ways, the key one being to be through a strong message to the research community, emphasising the importance of working with people with relevant lived experience. Today’s announcement builds on what worked for COVID-19 research and applies it to all types of health and social care research.
Our organisations have come together to show a strong united front. This public statement of commitment matters because there are still barriers to public involvement that have not been overcome despite the significant growth in it in the past 25 years. We have seen that simply letting public involvement spread ‘organically’ has not persuaded enough researchers that it is a vital part of how research into human health and social care should be planned and carried out for it to become universal. The perception is that involving patients in research will make it take longer and cost more.
There is a growing evidence base for how involving people with relevant lived experience can help ensure that research addresses questions that are relevant and important to the people about and for whom the research is being carried out. It can also help make it more acceptable for people to take part. However, that evidence is not enough on its own to persuade researchers who don’t currently involve the public to change and do so. We need to recognise that making public involvement usual practice needs a change in behaviour in the wide range of people responsible for all different aspects of research. Theories and practice in change management and behavioural change show that when the barriers to change outweigh the drivers (which is the case for public involvement), then you need a mixture of direction and drivers. You need top-down as well as bottom-up enthusiasm and commitment to drive the change.
Today’s announcement adds the missing top-down initiatives that we need to accelerate what has been a very slow change in behaviour across the research community since Sir Michael Peckham first suggested that public involvement would help to make research better for patients and the wider public.
The organisations that have signed up today, along with many more who we hope will join us over the coming months, will follow up the shared statement with a range of actions to support and enable the change we all want to see to put patients first in research. I fully expect that it will then take very much less than another 25 years before public involvement becomes usual practice in health and social care research. Five years would be good, thank you very much. Let’s work together across the research ‘system’ in the UK to finally achieve this.