Celebrating the second anniversary of our Shared Commitment to Public Involvement

Why we launched the Shared Commitment – a blog by Becky Purvis, HRA Director of Policy and Partnerships

It is two years since the 13 organisations that launched the Shared Commitment published our clear statement that involving the public in how we design and do research is not just a nice to have but a key part of doing good research.

And this week, 22 organisations are coming together to talk about the difference that this is making.

We came together because our experience during the COVID-19 pandemic, where there was a sudden drop in public involvement in research applications coming to the HRA, showed that while many researchers recognise the value that public involvement brings to their research, it was still seen as something expendable that you could trim when resources and time were tight. We don’t agree.

We published the statement, because together we can make a powerful statement that the whole health and social care research community – the funders, the research institutions, the regulators – expect the public to be involved in research.

Collectively saying public involvement is always important, expected and possible is just part of the challenge.

This statement doesn’t mean much unless we are also taking action to support it.

And this week, you can see how each of the commitment partners is working to make this happen. We are each talking about what we are doing in own way and asking members of the public to ‘mark our homework’. Because what matters isn’t how many events we have held or documents we have published, but the difference that it is making.

And this reflects how the Shared Commitment works. Each partner is working in its own way. We’re not all doing the same thing but we’re all pulling in the same direction at our own pace and sharing what we learn. This makes us powerful.

And by working in this way, as a collective, since the launch of the Shared Commitment, we have:

• committed to more than 70 new actions to improve the standard of public involvement
• development of new public involvement payment guidance
• Launched new Learning and Sharing meetings so we have a regular forum to develop ideas and overcome challenges

These are fantastic achievements, but we also know that there is a lot more we can do to build on the Shared Commitment, and we are working with our partner organisations to support this.

The Commitment couldn’t work without the people – staff and members of the public – who come together to share and learn. One of the strengths of the Commitment is that it has been co-produced with members of the public from all the partner organisations – we all come together, organisations and members of the public, on a level playing field to share our thoughts, experience and insights.

I’m really proud of the HRA’s role alongside all of the Shared Commitment partners and I’m looking forward to year three!

Reflecting on our achievements and challenges – a blog by Barbara Molony-Oates, HRA Public Involvement Manager

It’s hard to believe it is two years since the launch of our Shared Commitment to Public Involvement in Health and social Care research .

We launched the Shared Commitment on 11 March 2022, with 12 other leading organisations, to improve the quality of public involvement in the health and social care research sector.

I’m really proud that since then, our Shared Commitment has grown to include 22 organisations. Over the past year alone, we have had four new organisations join and we have many more on the way.

One of the key things we said we would do as part of the Shared Commitment is work together and these are the first two words in our joint mission statement.

This is really important because when we all work in isolation, we end up with the situation that now exists with the 'toolkit mountain’ discovered by The Patient Experience library, with over 530 different toolkits for helping people with public involvement!

Working together and telling each other what works and what doesn’t saves time, money and resources, and leads to a more streamlined experience for researchers and members of the public.

With this in mind, one of our key achievements from this year has been the launch of our Shared Commitment Learning and Sharing meetings. During these quarterly meetings, all 22 members of the Shared Commitment come together to discuss:

• how we can work more collaboratively
• areas of focus
• constructive feedback
• challenges and barriers

The other great thing about our Learning and Sharing meetings is that they enable us to lead by example by being open and transparent about our work which is something we are also encouraging researchers to do.

The meetings will also enable us to talk about difficult topics like payments for involvement, what happens when involvement goes wrong and how can we support researchers and members of the public to make sure that nobody is discouraged from involvement. We also need to talk about inclusion and diversity and how we make it easier for people who are traditionally underrepresented in research to get involved.

These are all challenging issues with no easy answers or quick fix, but by coming together regularly as a group and sharing our ideas and concerns, we are much better placed to do the work needed to overcome them.

Another highlight from the past 12 months, was our Shared Commitment Committing to Change workshop, where we all got together in person for the first time to agree the areas we want to focus on. This helped to lead to better joint working between partner organisations, such as Health and Care Research Wales, the NIHR Centre for Engagement and Dissemination, Health and Social Care Northern Ireland, the Chief Scientist Office Research Scotland and the HRA collaborating to produce a lay and easy-read versions of the Guidance for organisations about employment and tax for public contributors.

Internally, the Shared Commitment has continued to help us to improve and shape the way we do public involvement at the HRA. Over the past 12 months we have:

• launched our new Community Committee
• recruited 18 public contributors to a dedicated pool to support the recruitment of HRA staff
• supported the development of new guidance for public involvement in clinical trials
• introduced an involvement best practice checklist for people applying for research approval from us
• worked collaboratively with the public and researchers to update the involvement questions we ask as part of the HRA approval application form

As I reflect on our activities over the past year, my overwhelming feeling is a sense of pride, but we know we need to do more to build on our Shared Commitment and there have also been some challenges. One of our issues has been finding our feet as the Shared Commitment has grown and staying true to our commitments.

But as I look ahead, I feel very excited by what we can achieve. Our next key task is to make our partnership more visible, so that we can demonstrate the value and importance of public involvement to researchers and the public.

We are supported by our wonderful group of public contributors, who really help us make sure that what we do is meaningful, impactful and joins up all the excellent work happening in the sector.

Public Contributors are the engine of the Shared Commitment – a response to Barbara’s blog from Louise Vale, HRA Public Contributor

Initially I hesitated to add to Barbara and Roger’s excellent commentaries, but I have decided to contribute two observations.

First, I have seen how the Public Contributors Group has been the engine of the Shared Commitment to Public Involvement. We are a group of people from around the UK with lived experience of different health conditions and wide-ranging knowledge of public involvement in research. When someone raises a topic, we can all immediately relate to it from our own experience. It has felt as though we were driving the partnership initiatives, rather than just commenting on them. Barbara has arranged that we meet separately to give us the chance to exchange views openly, and I think these sessions have been invaluable. It is in these discussions that we seem to get to the heart of problems and start to pin down approaches that make sense from a patient and public perspective. Patients are at the beginning and end of the research process and, as Roger says, we need to be involved all the way through if health and social care research is to be successful in meeting patient needs. This applies as much to the Shared Commitment to Public Involvement as it does to individual research projects.

As the partnership grows, it becomes more of a challenge to give everyone the chance to participate in discussions, but we will continue to work hard to make this happen and keep communications free-flowing. Thanks to all the public contributors who have joined us including our Co-Chair Stephen Hill from the National Coordinating Centre for Public Engagement (NCCPE).

Public involvement professionals have also had an important role in the partnership, as they do in their own organisations, bridging the sometimes difficult gap between public contributors and those responsible for research and funding. The skills needed to do this job well are considerable, including the ability to understand different perspectives. This week someone asked me whether I thought public involvement professionals also need to have lived experience. I said that I thought it was a huge advantage. I wouldn’t say it was essential because the job can be done with empathy, but it helps a lot if you are not just valuing someone’s lived experience, you have shared it. Thanks to all the public involvement managers and staff who have oiled the wheels of the partnership with encouragement and support and kept it on the road. We still have a long way to go.

How the Shared Commitment is a step towards deeper public involvement in research – a response to Barbara’s blog from Roger Wilson CBE, HRA Public Contributor

Having been involved with the Shared Commitment from its very first meeting it was something of an eye-opener to read Barbara’s blog discussing some of the things we have examined, considered and done during those two years. The days pass by in a blink of the eye and the scale of the ground covered is not appreciated until it is detailed in this way.

It is hard to think back two years and answer the questions about whether we expected to cover this ground or whether we expected to have a positive impact on patient involvement.

Thinking about those questions now I am still not sure whether we can answer them properly. The ground covered has been different from what I expected. Many more organisations have come on board, from a range of disparate backgrounds, and the list of those which are showing an interest in accepting the Shared Commitment is truly impressive. These include international organisations and organisations exclusively based abroad.

Disappointments? I know that one impact I had hoped for was a deeper acceptance and understanding of what patient involvement is about. There are aspects of the evolution of our activity which are taking longer than I anticipated, even given my already extended ‘career in retirement’.

What do I mean by deeper?

For me the issue is about ensuring that the right people are involved in the right place at the right time. This means that as a health or care research project develops there are different needs. In a ‘perfect’ world there would be one involved public / patient person maintaining an overall view, there from the moment that a first draft of the research question was being thought about and working with the project until it reported or was published.

Others would be drafted in from time to time, some for short periods and some for longer. The need to understand ‘lived experience’ is met by those who have been active patients, or have been close to active patients. The need to understand the ‘healthcare context’ will come from carers, charity advocates, campaigners and the such-like. Some of these will also be able to help with routes to funding, presenting to ethics reviewers, analysing a patient view of the data and some will bring their background professional or work experience to bear where relevant. All of these characteristics and experiences may be found in a single individual but that is unlikely. To ensure we cover the ground we must be open to an ongoing process in any research project which brings people in for as long as possible, then we can thank them properly when it moves on.

The Shared Commitment can encourage our research organisations to recognise that research is not a solo activity but that it lives in the real world. This means that involving real people brings the real world into research much quicker and much more easily.

Some time ago I defined my ultimate ambition. Decisions about high quality healthcare and treatment should not rely solely on measures and observations from scientists and research medics. In that research they are working with patients and those patients deserve to have their voice heard too. But to get that voice heard we need patients in the development of the studies so that the right questions are asked and just as importantly the right opportunities to get the answers are identified. Then, above all, analysis of the study listens to what is said and does not just hear words lost in background noise which reduces them to numbers for convenience.

Only patient and public involvement will take us to that point. By making and sharing a commitment to helping to make it happen those joining the Shared Commitment are making a step along the road which one day may realise my ambition. I know that two years is a short time on that journey but we have taken an important set of ‘baby steps’.

Thank you to all involved, especially to Barbara Molony-Oates who has born the brunt of the work, and also to Jeremy Taylor and Jim Elliot who have provided self-effacing leadership.