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Reflections on the NHS Citizen Process

These are some of my reflections on trying to create a participatory process to involve people in the NHS England’s policy formation called “NHS Citizen”. The thoughts are based on observing an open design meeting held in Bristol on 22-23 October 2013.

Connecting with existing institutions: civil society organisations

There was widespread agreement that the citizens assembly should not replace or compete with existing civil society organisations but connect and complement them. However, there is a tension here in that many of the existing civil society organisations exist to advocate the particular interests of  individual patients or groups of patients. There will be times when the interests of all these groups coincide to advocate changes that will benefit all patients, but there will also be times where there are tensions and conflicts between different patient groups, for instance, about who has greatest need in relation to scarce resources. A key challenge of the citizens assembly will be in bringing these groups together in a way that does not simply reward those who advocate the loudest for one set of particular interests. This may involve existing civil society organisations having to go beyond their comfort zone to discuss difficult compromises and trade-offs in thinking about what is best for all patients in the NHS, not just those they represent. However, this could undermine their legitimacy with those they represent, so will these organisations want to engage in this way?

Connecting with existing institutions: the quasi-market

Whether you are for or against the quasi-market in the NHS it is impossible to ignore that it now exists. There are two aims for the introduction of this quasi-market that raise important questions for the Citizens Assembly.

  1. The introduction of the market is intended to replace the NHS’s top down bureaucratic structure of command and control to give service providers the autonomy and flexibility to innovate to better meet patient needs and to drive improvement through competition. Given this fragmentation of the service into a network of competing, autonomous providers, to what extent will it actually be possible to implement any decisions/recommendations of the Citizens Assembly without undermining this intended flexibility of service providers.
  2. The quasi-market is intended to empower patients by giving them a choice over what services they use, allowing them to hold poor care to account by voting with their feet and choosing to go elsewhere. Patients are empowered as individual consumers of healthcare. So what happens if the decisions/recommendations of the citizens assembly are contradicted by, or in tension with, the the individual choices patients make in the market as consumers of healthcare.

Of course, it is possible that the relationship between the quasi-market and the citizens assembly will be mutually beneficial, but when the decisions/recommendations of the citizens assembly conflict with either the logic of choice and competition or its outcomes, which takes precedence?

Voice and Evidence

There is a sense in which it is not exactly clear (at least to me) what is meant by either of the terms ‘voice’ and ‘evidence’ in relation to the Citizens’ Assembly.

At times ‘voice’ seemed to be used to refer to patients advocating their own needs and at other times to refer to public values about the NHS. There is a need to be clear about what ‘voice’ means, and if it is both of these things then to think carefully about whether the same process is capable of hearing both kinds of voices.

Similarly, what is meant by ‘evidence’ and what is its relation to ‘voice’. Does the evidence sought by NHS England from the process simply equate to the voices the Citizens’ Assembly aims to foster? As such, is evidence an inevitable by-product of listening to the voices of patients and the public? Or is it something different? At least some people appeared to believe so, as there was talk of the process providing qualitative evidence to rival quantitative research studies and randomised controlled trials, suggesting the Citizens’ Assembly should have a role in providing evidence about whether treatments are effective or not.

Again how voice and evidence are defined in relation to the Citizens’ Assembly has important consequences for its design and how it should interact with wider systems.

The need for speed? Thinking beyond procedural legitimacy

One of the criticisms of the National Institute of Clinical Excellence (NICE), which provides recommendations about what treatments should be available on the NHS is that it prioritises a robust procedure over speed of decision-making. When the public thinks that a life-saving drug is potentially available they want a quick decision. So, whilst procedural legitimacy (a fair process) is an important component of decision-making in healthcare, there are other components of legitimacy (for instance, speed) that potentially conflict with procedural legitimacy and, if not adhered to, can damage the legitimacy of the decision-making body in the eyes of the public. Therefore, it is important to think about the different components of legitimacy with regard to the sorts of issues the Citizens’ Assembly will address if its design is to gain widespread support from the public.

Transparency and culture as forms of power

There was often a tension in discussions between wanting to create a more collaborative working environment without new layers of bureaucracy and being sceptical of NHS England’s commitment, hence a desire for robust accountability mechanisms. So how can NHS England be held to account without an elaborate machinery of voting and elections etc?

Perhaps part of the solution is appreciating how transparency and culture can act as forms of power. There is a reason that vested interests are traditionally associated with secrecy and brokering deals in smoke-filled backrooms, transparency can keep people honest by exposing those who only advocate for their own interests to the detriment of others. Transparency can be a key tool in holding NHS England to account in their interactions with the Citizens’ Assembly and also in ensuring the Citizens’ Assembly is not itself dominated by vested interests. That said, there were some difficult challenges to transparency raised throughout the two days in regard both to protecting participants’ privacy and protecting those who may wish to criticise their employers in the public interest.

Culture can also act as a form of soft power. Most people like to do what they, and the people around them, think is right. Strong cultural norms also promote an ethic of self-regulation, where those who subscribe to the norms put pressure on those who deviate from them. So, if the Citizens’ Assembly can successfully foster a strong culture in which patient and public voices are valued within the NHS, these voices will likely play an important role in informing decisions about healthcare whether there are robust accountability mechanisms or not. This is not to say that other forms of accountability are definitely not needed, only that there are many forms of power and accountability, not just formal mechanisms like elections.

‘The usual suspects’ vs ‘the seldom heard’

There was sometimes a tendency to malign a group of people often referred to as ‘the usual suspects’ and set them up as crowding out the voices of another group, ‘the seldom heard’. I personally find this conception of ‘the usual suspects’ troubling. As a term, ‘the usual suspects’ is often used by people with power to dismiss those who are well-informed and committed to challenging that power and making a difference as unrepresentative of the general population, in favour of working with a more representative group of people who are less well-informed and more compliant. The usual suspects are likely to have a valuable contribution to make to any NHS Citizens Assembly and this contribution should be welcomed rather than excluded and devalued.

That said, it is likely that a special effort will be needed to involve those groups whose voices are ‘seldom heard’, and integrate them alongside the ‘the usual suspects’. The now famous participatory budgeting process of Porto Alegre in Brazil offers a guide for how this can successfully be achieved by focussing extra resources on mobilising disadvantaged groups.

Originally posted @ (now defunct) NHS Citizen Blog
October 29th, 2013

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