That difficult second album – a blog by Jim Elliott, Public Involvement Lead at the HRA

The creation of a partnership of so many major organisations that fund, manage and regulate health and social care research with the common aim of making it usual practice for patients and the public to be involved in that research offered real hope of that aim becoming a reality at long last. However, as we said at the time, making a public statement of commitment won’t change anything if it is not followed up by actions to drive that change. The first year of this partnership has seen all the partners make a start but, as we are all finding, it has thrown up challenges that we will need to work on together in the coming years.

As an avid rock music fan, the situation we are facing as a partnership reminds me of what has faced many bands after a very successful first album. The pressure to follow up an amazing debut with something better has been too much for some. Trying to come up with that difficult second album is where we are now. We need to emulate the Foo Fighters, among others, and produce a series of ever more successful albums!. No pressure then but I feel that we are on the way.

After a frenetic six months, in which we helped to bring the initial partners together to draft the shared statement of commitment along with our own specific organisational pledges leading to the launch of the initiative in March 2022, we have focused much of the first year working with the National Institute for Health and Care Research (NIHR) on the important, but not necessarily exciting, task of developing our ways of working as a partnership. We now have in place a sound basis on which the growing number of partners can now work together to achieve change.

One simple achievement in this first year was the decision to make the way we all report on the progress made to mark the first anniversary of the launch of the initiative easier. We recognised that formal annual progress reports are a lot of work to produce, and all too often don’t get read. We decided that each organisation should, instead, produce a simple account, like this blog, in which we will all reflect on what we did, what worked well, what was challenging and what we learned. That last point is really important. Working in partnership with people and communities is all about learning and it is often challenging. In fact, if it doesn’t feel difficult, then we may not be doing it right or taking it as seriously as we should. One of the benefits of good public involvement is learning the things that we didn’t know we didn’t know, the unknown unknowns.

At the HRA we developed four areas where we will work to improve public involvement both in the work we do ourselves, and in the research we review and approve. They are quite broad and will take a number of years to achieve, but we have made a decent amount of progress towards them.

In June 2023 we launched a new strategy and we worked with a diverse group of people ahead of and at the launch event in Manchester.  A key driver for the INCLUDE pillar of the strategy, was the Shared Commitment to Public Involvement.  Involving members of the public in the strategy development and launch was challenging for us, but, crucially, it helped inform the way the strategy was worded for a public audience.

We have also been trying to involve people for the first time in a number of different areas of our work. This included involvement is a major procurement exercise and in our business planning. One interesting impact of the latter was to rename the way we referred to it. Business planning didn’t make much sense to the people we involved so we changed it to ‘making decisions about the work we will do next year’ a name that passed the ‘Ronseal Test’ and did what it said on the tin. A small but quite significant cultural change.

Both pieces of work throw up challenges and didn’t go entirely according to plan, but they have enabled us to learn some important lessons. Perhaps the simplest and most obvious is that working in partnership really has to start at the beginning. You need to decide on what aspects of the work will benefit from involvement with the people you want to involve. Otherwise you risk involving people in a tokenistic way simply because you think you ought to involve them. Although we didn’t plan some of this involvement as well as we should have, we will, as a result, plan better in the future and involve people in that.

A number of long-term areas of work have received an added impetus through the Shared Commitment, including identifying and publicising case studies of how good involvement brings benefits to the approvals process and providing practical tools and guidance to researchers at the approvals stage.

We will very soon roll out a check list for applicants to encourage them to review what they have said about public involvement in their applications to ensure that they provide the Research Ethics Committees (RECs) with information that will help their review. Where researchers have involved the public in designing their study, they will be encouraged to take one of those people the REC meeting so that the Committee can talk directly to them.

A partnership with the NIHR Centre for Engagement and Dissemination and Health and Care Research Wales and number of researchers and public contributors produced guidance on employment status and tax liability aspects of payments for public involvement. The Shared Commitment provided a helpful way to publicise the guidance which was initially released on a ‘consultation in use’ basis and will be finalised in the first part of 2023.

The Shared Commitment and HRA’s difficult second album is taking shape informed by the new things we have tried this year, the mistakes we have made and our collective commitment in partnership with the amazing group of public contributors we have worked with. I am quietly confident that a series of brilliant albums will follow 2022’s remarkable debut when the initial partners released our version of ‘Band Aid’, ‘Involve the World’.