As patient advocates, we focus on outcomes. We want to make things better, to deliver better outcomes for patients. We rarely get the opportunity (perhaps it should happen more often) to be reflective, accepting that outcomes will follow, whether clearly identified or not.
This is what the Shared Commitment has been about. The actual benefit to patients lies downstream of what we were working on, quite a long way downstream, but the people we were working with had a clear vision of how it would impact on clinical research over time. Trust me, was the message, so we did.
Jim Elliott, Head of Public Involvement at the Health Research Authority, and Jeremy Taylor, Director for Public Voice, at the National Institute for Health and Care Research were inspiring leaders of the Shared Commitment. As part of the project, I took part in discussions with them, representatives of the Shared Commitment partner organisations, and the other patient advocates with ‘lived experience’ of research.
During our conversations as patient advocates, we discovered as we talked that our experiences were very different by the nature of the disease or condition we faced and the treatments we had experienced.
Our involvement in research varied too, some had been participants in clinical trials (including randomised treatment studies), most of us had contributed to observational studies, some of us had been involved in study design at an early stage, some later as issues such as ethics came into prominence, some were involved in the development of programmes of research and the challenges of funding.
We learned from each other as the development of the Shared Commitment evolved. The wording of joint statement for the Shared Commitment was a focus of continuous debate with the subtleties of the English language being explored at various times. We all had a say in that, but it wasn’t a game or an indulgence, it was done with the clear intent of making the statement of commitment clear and unambiguous.
Jim now talks about the second album. It will be a very different album for the patients involved because the focus is now on each organisation which has signed up to the commitment. What can we as patients do? It is the executive team we work with which must deliver the way the commitment is expressed and implemented.
We have to hold them to account, make sure that the Shared Commitment lies clearly in their mind as new ideas and procedures are put in place and new research projects developed. Mechanisms for holding our executive partners to account will vary and should be agreed between us, it is a Shared Commitment in that sense too.
I have a dream (sorry about that) that Jim’s second album will contain a clear indication that this kind of sharing is developing. It will give us all in the Shared Commitment a much clearer picture of how things are shaping up. The strength of it is that both patients and the management team will be able to talk about, and present, results. This way of working is common of course in charities, where patients and the executive team often work closely together developing procedures and processes. Now we want the same kind of openness from our Shared Commitment members.
Roger Wilson OBE, HRA Public Contributor