Today the HRA, along with 12 other organisations, launches a new shared commitment to public involvement. Roger Wilson, a former cancer patient, was one of a number of public contributors who helped us with this piece of work. Roger and his colleagues, who represented a cross section of members of the public who have taken part in health and social care research, provided valuable insight to the commitment and played an important and equal part in deciding what should go in it. Here he blogs about the experience.
Roger Wilson, public contributor
'One of the challenges that patients who take part in public and patient involvement work soon discover is that researchers come to them late in the development of their study, most often wanting help with consent information. The researchers learn that late in the process is missed opportunity. They cannot take full advantage of the alternative views and balancing arguments that patients, carers and others with ‘lived experience’ can offer.
When the Health Research Authority (HRA) and the National Institute for Health Research (NIHR) agreed that a collaboration of all the key public sector research organisations could start to address this problem, they also agreed that they themselves should engage patients and carers in the process.
So it was that as the collaboration came together most of the partners brought with them one or two lay representatives from their interested patient and public groups. The HRA asked members of its Patient Involvement Network to express an interest and so I joined the project at their invitation.
The (virtual) meetings were inevitably quite large. I learned that I could get 49 faces onto my Zoom screen (look it up) and I also saw very quickly that the professionals were very open to the comments and ideas that the lay members brought. The meetings were focussed on creating a joint statement from the 15 partners and I dread to think how many different variations were actually tested in the process. The English language can become quite tortured, but the demand for clarity and simplicity brought by the lay members was readily adopted by the professionals. There were also compromises to be made between the organisational demands of different partners, but when process and purpose have such substantial overlap, I felt that the patient voice was adding value for both.
We decided to have some patient-only meetings (bringing in the joint project chairs from HRA and NIHR) and discovered one another. We came from very different disease/condition backgrounds and some were new to each other. My skills as an involved patient have been extended by working with involved patients from other areas of healthcare and respecting the ideas they put forward.
The whole process was managed by HRA. The relief when the final draft of the joint statement was agreed was almost palpable. It wasn’t the end of the process – of course. The purpose of creating a joint statement and the realisation of that ambition is one thing, implementing it and ensuring that the commitment it expresses is understood and met within the research community, is quite another. We have helped prepare for that too, including commenting on draft graphics in some detail – the depiction of walking frames, the Body Mass Index (BMI) of individuals, and whether faces should be detailed or stylised.
My involvement brings my ‘lived experience’ of cancer treatment to researchers to help them create more relevant research studies with better research outcomes. Patients are stakeholders in the research process and it is right that their voice should be heard, helping researchers design high quality studies.
Research designed without the patient voice may be irrelevant, may fail to address real needs, and unconsidered treatment side-effects can harm patients. Involved patients are an untapped resource of wisdom and understanding about clinical trials and their outcomes.
Innovative research benefits from involving patient and public viewpoints, and they can be vocal friends of innovation when it is implemented.
As a test of involvement, the shared commitment work has been exemplary. The joint statement, and the subsidiary statements by each of the partners are now public and this clear commitment to the research community to enable, evaluate and extend lay involvement by bringing in those with ‘lived experience’, or members of the public where it is more relevant, is truly important.
The test will now be, have we got the right support mechanisms in place to help researchers develop and value involvement in their studies, projects and programmes of work? We need to make known more widely the regional Research Design Service activity of NIHR, the oversight brought by Research Ethics Committees, the long-standing work of Clinical Trials Units, the work undertaken by individual universities, the list could go on. I know that, as a member of the HRA Patient Involvement Network, this is one regulatory body which has been facilitative and will become more so.
Involvement works, let’s use it to everyone’s benefit.'