The design of healthcare institutions benefits greatly from citizen participation

Whether healthcare policy should be clinician or politician-led has been the source of much controversy in recent years in the UK, with this debate reaching a peak with the debates which accompanied the passage of the Health and Social Care Act. Claudia Landwehr from the University of Mainz considers how to make decisions over health care more fair and democratic. She argues that letting citizens participate in the design of institutions making health care decisions can be a big step forward.

Credit: DFID – UK Department for International Development

Even if the budget for health care were not limited, decisions on who should receive what medical services and what parts of the health care system should be extended or restricted would be necessary. Different principles could be applied to guide such choices: Applying a principle of distribution according to need would give priority to those in most urgent medical need. Alternatively, we could apply a principle of efficiency, and spend money where it generates the biggest utility (say, in life years), thus maximising benefit to the society as a whole.

Some have argued that we should take the patient’s behaviour into consideration and prioritise those who refrain from potentially health-damaging lifestyles, while others think that we should try to fight inequality by targeting spending on disadvantaged groups. In a pluralistic society like ours, consensus on how to rank these principles seems out of reach.

We need to balance different priorities in any particular decision over whether or not to fund a specific service for a patient (or group of patients) with a specific condition. Many countries have reacted to this challenge by defining ‘baskets’ of publicly funded health services, including ‘essential’ or ‘proven’ services and procedures and excluding controversial ones.

Fair decisions-making procedures

Philosopher Norman Daniels and physician James E. Sabin (both of Harvard University) thus ask how limits in health care service provision can be set fairly. With their model “Accountability for Reasonableness”, they advocate a deliberative decision-making procedure that takes explicit and public decisions, bases these on reasons that fair-minded people accept as relevant, allows for revision and appeals and that is appropriately institutionalized.

Governments that have set specialized agencies to deal with the challenge of health care priority-setting have been inspired by Daniels and Sabin in their institutional design. The English National Institute for Health and Care Excellence (NICE), in particular, was influenced by this approach to procedural justice.

However, some questions remain open in Daniels and Sabin’s work. Who are those ‘fair-minded people’ to whom reasons for decisions should be relevant? Moreover, if different institutional solutions that fulfil these conditions are possible, how are we to choose between them? It seems that the Accountability for Reasonableness-framework leaves considerable space for institutional designers and does not provide definite answers to questions such as which stakeholders to involve in the decision-making process or which decision-rule to apply. So who are the institutional designers and how could they make fair and democratic design choices?

Deciding how to decide

If governments delegate important decisions like to specialised agencies like NICE, they engage in institutional design that has far-reaching consequences. Our own research shows that properties of the decision-making procedure and the set-up of the decision-making body significantly influence an agency’s decisions and the resulting distribution.

Any far-reaching political decision requires a democratic mandate, but procedural choices have particular significance as they can perpetually disadvantage some groups and interests. The decision how to decide is thus an important one that should be given much more attention than is presently the case. In a democracy, institutional design should ultimately be in the hands of the democratic demos, that is, the citizens themselves.

Engaging citizens in institutional design

Are citizens interested in questions of institutional design? Or is the matter too abstract and complex for non-experts? I argue that, to a considerable extent, any one of us is an expert where we have to make decisions about how to decide. We engage in such decision-making permanently in our everyday lives: at the workplace, the school board, the sports club, within the family. We all know, for example, that strict unanimity requirements make final decisions difficult to reach. And most of us are aware of who the relevant stakeholders in a given decision are.

This is why our team at the University of Mainz organised a citizen conference in which 20 citizens – selected in a two-step random sampling procedure – where tasked with developing suggestions for the institutional design of an agency that takes priority setting decisions in health care. Without any topical input, the citizen group was able to identify criteria for fair and democratic institutional design and to translate these into specific reform proposals.

In the discussion, members of the group raised arguments very similar to those in academic debates and made several innovative and truly original points and suggestions. Not only was the quality of deliberation high, the citizen group was also able to formulate a joint vote that has been presented to the public and sent out German MPs and respective interest groups.

Our positive experience with citizen deliberation on institutional design shows that we can make design processes more transparent, inclusive and democratic. Even if institutions like NICE do achieve ‘accountability for reasonableness’, their very set-up and design should enjoy a clear democratic mandate and be subject to democratic challenges and revision.

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Note: this article gives the views of the author, and not the position of Democratic Audit UK or the LSE. It originally appeared on the blog of the Crick Centre and is reposted with the permission of the blog’s editor. Please read our comments policy before posting.

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Claudia Landwehr is a professor of public policy at the Johannes Gutenberg University Mainz. Her research focuses on the theory and practice of deliberative democracy and issues of delegation and institutional design.