Healthwatch, ‘unknown unknowns’, and the value of a friend who tells you the truth

In Donald Rumsfeld’s famous formulation, there’s a difference between ‘known unknowns’ and ‘unknown unknowns’. Known unknowns are things you know you need to find out about. If you are, for example, a health system, you may decide you don’t have a great sense of how satisfied people are with a particular service you provide, so you may decide to run a survey of patients to find out.

Unknown unknowns are much more challenging. They are the things that you don’t know that you don’t know. Again, for a health system, this might mean the opinions of communities you don’t interact with at all, or people’s experiences of an aspect of your services that are so well established, that you don’t think to ask people about them. The quality of your communication and administration itself might be an example of something that falls into this category.

Since its establishment in 2013, Healthwatch has been a part of the health and care system that makes space to find out about the unknown unknowns. Through the relationships that local Healthwatch organisations proactively build with communities, they are able to create a space for the unsolicited feedback that is needed to catch developing issues within the system, and improve services over time.

Healthwatch is now being abolished – and this decision has proved controversial. The government argues that abolishing Healthwatch will help ‘bring patient voice “in house” and give it a greater profile.’ But there is still a real risk that disbanding independent organisations that collect independent feedback, and replacing them with more machinery within Whitehall, will be at odds with the government’s ambition to both empower patients and distribute power away from ‘the centre.’  

Wherever one stands in this debate, the process is now underway to design what comes next. Over the past few months, The King’s Fund has been working with Healthwatch England on a project to gather insight about what worked well about the Healthwatch model, as well as the challenges it faced. As part of this, we’ve been speaking to a wide variety of people with expertise on the subject of patient experience and engagement, and drawing out insights that could inform the design of a new system.  

Alongside the importance of creating an organisation through which unsolicited feedback from individuals and groups can be compiled and shared, the key message that we heard in terms of what worked about Healthwatch and what should be preserved in any new model is the value of independence. 

By this, participants in our research meant, that it was essential that Healthwatch was, and was seen to be, independent from the wider health and care system. This, it was felt, was what gave Healthwatch the credibility it needed with communities so that people felt they could trust them with their views, stories and experiences. Indeed, we heard that for some people, often those who had the worst experiences of care and consequently the least trust in statutory services, it was only because Healthwatch was independent that they felt comfortable talking sharing their experiences at all. This work is integral to combatting health inequalities.  

Independence was also important for Healthwatch’s relationship with the wider system, enabling it the space to, at times, deliver difficult messages about issues that systems might otherwise be incentivised to ignore. During our research, we heard that some of the key successes that Healthwatch had over the years were times when it had been able to spotlight emerging issues in areas that the rest of the system was ignoring, most notably around NHS dentistry, GP access, and as mentioned above, admin.  

Which brings us to the key value that a patient experience function must embody within a health and care system. It needs to be a friend who is prepared to tell the truth, even if that truth is uncomfortable. It needs to be free from the pressures that are on other parts of the system, so that it is able to, where necessary, go against the grain and speak truth to power in the interests of both the system itself and the wider public.  

This is why it is so important that as the replacement to Healthwatch is designed and rolled out in the coming months and years, that the concept of independence and the ability to hear what others don’t are prioritised. This is what will enable it to be a critical friend to the health and care system, able to challenge it and bring new issues to its attention, and a trusted friend to communities and service users. 

The government has been clear that they do want to give patients more power and more choice in the new system. Our work suggests that independence will be important to achieving that goal.  

If we lose this, we risk losing the insights that the health system needs to design services that meet people’s needs, and we risk leaving unknown unknowns exactly that – unknown.