I want to write about the future of the ‘patient movement’ – a piece that I hope will stimulate self-reflection in the camp and a bit of a debate about the future of patient organisations, local HealthWatch and Patient Participation Groups. It may gently challenge people, such as my good friends at National Voices, but also provide some ways forward.
But that will have to wait.
The first step towards that article is to provide a couple of thoughts about patient and public engagement, co-production or whatever you want to call it. These in turn set the scene for that next piece.
This short blog (I promise) is about the need to distinguish between two different purposes for having patients as partners in your work. Making sure you keep these two streams clear in your mind can help you avoid other blockages to effective engagement.
The background – those endless twitter spats about representativeness
Whenever I wade into a Twitter conversation about patients as partners for change, it lurches sooner or later into issues of ‘representativeness’ and ‘representation’ – hissy debates about ‘who’ is at the table and their relative legitimacy that serve to drown discussion on the ‘why’ of involvement, which for me is key.
My blog on the Rep Trap disentangles the issue of representation and reframes the ‘rep’ role as ‘patient and public advisor’. But there is a step before that. It’s about being able to distinguish between two different functions for patients in the planning and design of services – and the requisite mindsets needed.
1. Check – the governance role
When thinking about planning and design services, if you want to involve patients at all (and of course you should!) it may be useful to have people in a ‘governance’ role – that is: part of a committee, steering group, or other mechanism that requires them to provide ‘critical challenge’ or provide part of an overview of proceedings.
This may be at corporate or programme level. And these folk adopt a ‘scrutiny’ role and need to have strategic expertise and other skills. They need to be particularly good at asking the right questions that keep things on track. In some cases, this can tip over into an adversarial mode, particularly if the role is unclear or if there is a lack of learning and support.
Here, there will be questions about whether the ‘rep’ is the conduit for other ‘voices’ and/or opens the door for others, ensuring the group as a whole listen and act upon other people’s views. Now, it’s time to read that Rep Trap blog! Or wait till the next bit…
2. Help – the improvement role
In contrast, within service development work (quality improvement, pathway redesign, that sort of thing) you need people who can take off that ‘checker’ hat and work as partners for future improvement. These are the folk who can bring insights and richer understanding to the task at hand, help generate more options and ideas and change practice. NB. My CLAHRC NW London Fellowship Project focuses on the benefits of patients as partners in service improvement.
Again, people need to be able to build relationships in order to influence, but they should also be able to be forward thinking and insightful into possibilities. They are not so much the askers of ‘what happened’ or ‘what did you do’ but are the ‘what if we…’ collaborators. This is an instinctively partnership mindset.
By the way, you may still need the ‘reps’ (the checkers) on the project steering committee or programme board overseeing the work of course. If you are on this road, then the question is not about who ‘represents’ whom, but what is the right mix of people to have in the room in order to gain insight and help generate options for the future. These may be a mix of people with ‘relevant experience’ of using services, as well as patient advocates, for example, people from patient groups, involvement specialists and the like.
Can the patient movement change?
Of course, the two roles – governance and improvement – can overlap, and there are times when you need, as a patient partner, to be able to both critically challenge and collaborate. And to be a ‘checker’ does not mean you are not helping! However, this distinction seems to have unstuck a few people mired in futile debates about representativeness, and supports us to ask the initial question, what sort of work do we want to do? Before we try to address the ‘who’.
From here, it is a short step to the next blog: The patient movement has historically had to play the outsider. In seeking its legitimacy through a justifiable striving for independence, it has often risked adversarial relationships and our influence has been narrowed due to having to join those endless boring scrutiny-type committees.
Those ‘us and them’ relationships are not right for the situation we find ourselves in, with a healthcare system and staff needing support and joint working to find solutions to a crisis. I think we can help, but only if we have the right mindset, opportunities and skills.
The question for my next blog is how those in the patient movement can position themselves as partners for improvement and transformation. The future legitimacy – and I believe, the very survival – of the patient movement and healthcare depends on it.
I hope this helps? Let me know.