When I took up post at Healthwatch England in 2013, I had travelled across many policy domains, working in charities, in academia and in government, but I was a newcomer to health.
With the natural curiosity of the foreigner in a new land, I was intrigued by the amount of heat generated in conversations about patient and public involvement. I saw emotions run high, and predominant amongst those emotions was frustration. Frustration from patient groups who ask: why are we not being heard/taken seriously/in the right conversations at the right times? And frustration too from the managers, commissioners and practitioners who wearily confess that engagement feels like another burden, a further task on their crowded to-do lists.
And here is the paradox: the stated commitment to public and patient involvement is much higher in health than it is in most other policy arenas. Indeed, it is enshrined in legislation. By contrast, if the Chancellor changes rates of income support or the indexation rules applied to pensions, he is under no obligation to consult. Likewise, a change in national curriculum or the introduction of a different package of support for offenders pass into national policy with little expectation of public or user engagement.
So how can we take the conversation about public involvement to a new place, start to reduce the heat and begin shedding light on this issue? I think these three things might help:
1. Start with “Why?”
The discussion about patient and public involvement too often focuses on questions of how. How can we secure representation, engage beyond the usual suspects, be credible? Don’t get me wrong, these are all good questions. But questions of “How?” should only be posed once an organisation has answered the question “Why?”. Starting with why means an organisation has to be honest about its motivations, clear about its end goal and specific about what is up for grabs in the conversation and what is not.
Why questions are strategic in nature and require the involvement of senior decision makers. This means that asking why not only secures clarity, it can help write involvement more deeply into an organisation’s plans, affecting its priorities and decisions, rather than being a last minute operational add-on.
2. Ask not what will involvement take, but what will it add
Let’s be honest, engaging with the public and patients is often seen as an organisational burden: something that might disrupt, distract and, most feared of all, slow things down. To counter this, we need to move beyond demonstrating a moral imperative and start showing that involvement and engagement helps achieve organisational end goals more quickly and efficiently. Tough decisions are less likely to be unpicked when people see first-hand the difficult trade-offs involved. Services that users have been able to design and personalise are not only more effective but can be cheaper too. Careful consent is critical to sharing existing health data, but unlocking people as data generators would revolutionise our evidence base on health.
3. Let’s talk about power
Finally, in a new conversation we need to say things that previously went unsaid. Creating a dialogue with your users, or with the public more generally, can feel frightening to people who have been promoted and rewarded for being experts. It can feel like ceding power. The interactions patients have with clinicians, managers and paid staff frequently leave them feeling powerless.
Acknowledging these feelings and the power imbalances in these conversations – perceived as well as real – is fundamental to creating open and honest dialogue. In the longer term, it might also help create a new understanding of where power sits, challenging the very division between those “in the system” and those who “use the system” and recognising the permeability between those two categories as well as acknowledging their interdependence.
A new conversation, framed in a new way, will help reduce heat and start shedding some light on this important issue. I hope these thoughts help unlock that conversation,
Good luck – and don’t forget to send me a postcard telling how you get on.
Katherine Rake is Founder and Chief Executive of totalpolicy.co.uk, and was previously Chief Executive of Healthwatch England