There is a new healthcare industry. Patient involvement became inclusive as ‘patient and public involvement’ (PPI) and is now rapidly becoming ‘public involvement’. In research it is acquiring an energy, a workforce, an academic community all of its own. We have advice from regulatory bodies, published standards, endless guidance and retrospective analyses of experience in small very specific case studies. We have started to see systematic reviews, with inconclusive conclusions. We have a journal of our own. We even have privatisation as an issue. It is however a uniquely British development and I would argue that we have lost sight of what it is really all about.
Let me put my cards on the table. I attended my first research meeting as a cancer patient in 2002. I am a journalist by background with a long management experience. I am curious, analytical, occasionally creative, and sometimes abrasive. In 2005 I co-wrote the patient involvement plans of UKCRN, the first iteration of what has become NIHR CRN. I attended the DoH interview from which the contract was awarded and took the part-time role of Associate Director for Patient Involvement. I had to relinquish that in 2007 when I required further treatment for my cancer which left me disabled.
I have spent a lot of time in the last year with the largest European cancer research organisation, EORTC. The European Organisation for the Research & Treatment of Cancer is not an EU institution although it does get some project funding from EU sources. EORTC is a Belgian charity, founded over 60 years ago, is currently running or in follow-up with about 200 clinical trials, and employs about 200 staff – methodologists, statisticians, doctors and research scientists. It has partnerships across the world, engages hundreds of European clinician/researchers with specific tumour specialisms and has an influential policy voice. EORTC is considering how patient involvement can be brought into its core activities, there is already some involvement in the tumour study groups. Note that this is patient involvement, there is no role for the public.
In 8 of the last 13 years I have been a patient member of faculty for the MCCR Workshop run in Europe. There is a similar workshop in the USA. This Workshop is an intensive six day course for young oncologists from all around the world. They all have an ambition for research in their clinical career. About a quarter of them are working in the NHS. Many of these young doctors have never talked with a patient about their research before – the exceptions being those from the NHS. None of them however wants a non-patient to be involved with the study they develop on the course. They can accept that I may not have experience of the specific tumour type they are proposing to research but they recognise that I bring a viewpoint from an experience they have not had and that I understand issues in a different way although it is one which is relevant to their plans.
This experience is making me focus quite hard on what I think is essential. I want to get away from the plans that large-scale UK organisations seem to have to simplify terminology and create ill-defined systems which drive relevance out of the original intent.
Our intent back in 2005 was patient involvement. There was a lot of discussion about the use of the word ‘patient’. Cancer was using ‘consumer’ (as NCRI still does) because it allowed carers to be included, in mental health the term ‘service user’ allowed inclusion of family/carers to address some of the communications challenges which exist. Whatever the term actually used the binding principle was that of the ‘lived experience’ – although we had not defined that term then. The objective was to replicate in the wider healthcare research community some of the benefits which the introduction of a structure for patient involvement had achieved in cancer research through NCRN. That in turn had learned from HIV/AIDS research in the 1990s where the Medical Research Council had opened its doors to patient involvement.
Patient involvement in research has a clear objective, to enable better research, relevant to patients, which can be explained easily to patients, implemented more readily and can realise benefits for patients more quickly. When I joined my first cancer research meeting in 2002 that was the aim and it remains the aim.
So how did the primary need for ‘patient involvement’ become subsumed, its purposes obscured, into a woolly agenda driven out of organisation speak and something ill-defined called ‘inclusion’? I will let others answer that question. Then there is that appalling trio of PPI. Get rid of it.
Lets get back to core principles. You can have as much or as little ‘public involvement’ as you like, just get on and do it and don’t bother me with it.
We should focus on ‘patient involvement’ and resolving the challenges it faces. The issue of identifying impact should be rejected. No research group assesses its staff on their ‘impact’, the view is more rounded than that. Involving patients is a cultural issue, it represents change, and such change can only be assessed by looking at the organisational culture in a structured analytical manner. As far as I am aware only the NCRI has ever done this, and then perhaps not consciously. Considering the performance of individuals is a different matter and is closely related to the challenges of recruiting, training and supporting patients to be involved. We find it difficult to identify and turn away poor performers. Many organisations, including NCRI, have solved all of this but the indications are that each resolution is specific to each situation. We can do this. It is not easy but it can be done. The will is there among researchers and among patients, if only you can get to them, given all the obstructions that are put in the way.
People with the ‘lived experience’, not the public, will change research for the better. The easy term is ‘patient involvement’ but we have to treat that as a generic, accepting that it needs refining in different situations. Properly implemented involvement of people with the lived experience is what we must be talking about and getting on with.
Lets not lose sight of this.