By Simon Denegri
The National Institute for Health Research (NIHR) ‘Breaking Boundaries’ review has been the largest exercise of its kind in any country to take the temperature of public involvement. The depth and breadth of the response cannot be ignored.
We have received over 500 survey responses and 80 submissions from organisations, held workshop events with patients and the public around the country, and taken evidence from public involvement colleagues across the globe and from charities and industry.
It says everything for the passion and commitment of the public involvement community that so many people have put such significant amounts of time and energy into responding to the review. As Chair of the review I know I speak for my colleagues on the review panel in saying that we are acutely aware of the duty upon us to do justice to your generosity with a report that stands the test of time.
As this newsletter goes to press, the panel will be meeting to discuss its vision of public involvement in 2025 and to finalise our conclusion and recommendations. Our findings will be made public at the INVOLVE conference at the end of November.
It is pretty clear from what people have told us that we have achieved much in public involvement over the last decade. Our international colleagues are envious of the extent to which public involvement is embedded in the NIHR. They regard INVOLVE as a jewel in the crown which they wish they had.
But we all know progress has been inconsistent and patchy. A lot of what goes under the banner of public involvement is tokenistic. We still haven’t mastered the way to do it. Too many patients, the public and researchers feel insufficiently supported and empowered to be partners. People are anxious to see greater diversity in our community. Questions over ‘quality’ and ‘impact’ are perennial headaches that, unless addressed soon, will seriously undermine how we grow and prosper.
Listening, reading and speaking to the many voices who contributed to the review and understanding where public involvement has made a difference has been a little like tuning in a radio. Some of the signals are stronger than others.
Making research more relevant, improved priority setting, greater accountability, a more transparent research cycle and growing rates of research participation are just some ‘wavelengths’ where the signal is clearest.
But the signal that is intermittent is the extent to which patients and the public are equal partners in producing new knowledge that will improve health and social care. Making this happen, making it the norm, is the challenge for the future.