Beyond Them and Us: How Patients Can Help Improve Healthcare

by David Gilbert

January 27, 2015

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.

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9 comments on “Beyond Them and Us: How Patients Can Help Improve Healthcare”

  1. I think the distinction between the 'checkers' and the 'helpers' and the realisation that the two roles can overlap is helpful in this murky debate.

    What is clear for me is that purpose and outcome of patient engagement/involvement/co-production, or whatever you call it, is more important than any debate of representation or representativeness.

    Your question about how the patient movement can position itself to be positively engaged in improvement and transformation is a key one. It is vital this voice is wanted and heard at every level and should be seen as essential not a desirable optional extra.

  2. Very Interesting blog David. I am trying to have more patients within governance roles here at the Faculty of Health Sciences in Southampton, with some success. I agree there is a problem with the perception of representativeness and also agree that shouldnt be used to be a barrier for involvement. Whilst there is a place for 'one-off' stakeholder patient events (tends be be no more than consultation, thus enabling the organisation to 'tick box' the exercise), you cant beat in my view a patient being a more permanent member of a group or committee to really make an impact.
    However, that does take us into the murky world of culture. Do patients being present actually change the meetings 'culture' and the type/nature/tone of conversations being had or does the patient have to conform to the existing culture present to gain acceptance? Important questions and one of the themes of my PhD I will be exploring.

  3. Hi, what is expected of a patient, in a PPG, having been approached by my practice, and being reluctant to get involved at first I attended, but I also read the practice website and did my own research (Directed Enhanced Service Specification Patient Participation) Being over 50, and also being a carer and having experienced and used NHS services, attended local listening events, at one discussing with Hugh Reeve, and emailing to my practice, how he had inspired me to try and make the NHS a better organisation for doctors and patients. I also no, how difficult it seems to be, to engage with members of the public and get them involved in the first place, I did find it intimidating at first, and we seemed to cover the same issues at each meeting, the meetings were at first once a month, but then changed to every two months, due I believe to resources and the work involved with the group, and I have taken to twitter, as my chair told me to keep challenging and asking questions, but of late I feel like I am becoming an inconvenience and never attended the last meeting, and feel I am being counter productive, as is mentioned above, what do you suggest, my chair thinks I should be more optimistic!

    1. I'm on a regional PPI group, and have been amazed at how slowly things change. Our group were generally getting v demotivated and it was probably about to collapse, when we identified a piece of work we could do. One thing to focus on. Our e-learning module on Raising Awareness of Neurological Conditions is being launched in early March. It won't change the world, but it's useful. Can your group find a project you can complete? If you don't feel like you're achieving anything it's very difficult to be 'optimistic'...

    2. Maybe it would be worth having a quiet word with the chair about the purpose of the group and sharing your view on what you feel it is? What about other people attending, how do they feel about what happens currently and where it might or could develop? You might find you have some support from others in the group.

      It's hard to be optimistic if you're volunteering your time & don't feel it's worthwhile. Only you can decide if you can carry on and help make some changes to improve patient experience.

  4. I respect, the chair, the person does good work, but the group is not a snap shot of the local community, most of them are involved with NHS, and the chair has kept me in the loop, and has told me , appreciates my contribution, the chair is forward thinking , but the chair is a member of the practice, the group is meant to be about public patient involvement ,but for this to happen and to reach minority groups we need more public involvement, we have spoken about this issue.

  5. David, we at National Voices agree with you and enjoy being "gently challenged". The work that you and Mark Doughty did for us in developing a cohort of patient leaders had a huge impact on our thinking.

    We are fans of co-production and support the 4PI principles of service user involvement

    Our Wellbeing Our Way programme is all about strengthening the connections between the voluntary sector and people with experience of services.

    Keep up the good work!


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