Social participation for health decision making: how to get representation right

Political representation

One of the most oft-cited concerns of stakeholders in social participation efforts is the representativeness of those who contribute. WHO experts share some guidance with us.

By Kira Koch and Dheepa Rajan

Social participation initiatives are on the rise, and increased interest by governments can be seen across the world. And this does not come without reason. Participatory spaces help policy makers to meaningfully engage with the population in a structured and institutionalized way, not only to better understand their needs so that they can adopt policies and strategies that are more responsive and acceptable, but also to enter in collaboration with populations, communities and civil society in an age where co-ownership and co-production of health is crucial. Yet, policy makers and organizers of these participatory spaces are struggling with the ‘how’ of participation; one of the most challenging issues is that of representativeness. It is the topic which stakeholders express most concern about, as evinced by the number of mentions it received in our case study interviews [1] for the Handbook on Social Participation for UHC, and in the literature. But paradoxically, despite the perceived importance of the subject, we see that representativeness is usually not explicitly reflected on by organizers of participatory spaces. Lack of transparency regarding selection criteria, an ad-hoc selection process without clearly specifying roles and objectives, or somewhat random appointment of representatives by parliaments or health authorities without explicit criteria are just some examples to mention here.

Let’s try to unpack some of the issues around representation in participation.

First of all, it is important to clarify what representation is and what makes it useful in terms of participation which feeds into health sector policy making ? Not everyone has the resources, time and is willing to participate and voice their opinion on a health issue. Let alone, from a practical point of view, it is simply not possible to invite everyone who wants to participate due to costs, feasibility and scale. We therefore need to find representatives who can ‘act in place of’ someone, often the public, for the very simple reason of reducing participant numbers to a manageable level in terms of allowing for discussion and debate.

The issue of representation is closely linked to legitimacy and credibility. If those who are part of a participatory process are representative of whom they are supposed to represent, then they are also legitimate. More importantly, the results of the participatory process are then also seen as legitimate. But how to find the ‘right’ representatives who can fulfill this representational role?

Some argue it should be a cross-section of the population at large based on demographic characteristics, embodying so-called statistical or quantitative representation. Yet, we argue that this method does not really work for the health sector, and also does not serve the purpose of health policy-making. Why? Because selecting representatives based on the idea that the frequency of demographic characteristics in the population should be mirrored as exactly as possible does not ensure the diversity of views and characteristics needed to improve health system performance – the very reason for a participatory approach to health policy-making. Instead, qualitative representation may be more apt, by guaranteeing that the occurrence of prespecified characteristics within the sample is achieved, even if these characteristics are not represented with the same frequency as in the general population.

To sum up, representativeness for population engagement is about getting the ‘right’ public with regards to the policy question at hand. Importantly, the policy question needs to be precisely and clearly formulated and communicated in order to build a participation selection strategy on it. In addition, power imbalances between participants need to be acknowledged and leveraged out by format & design elements of deliberations, as well as by capacity building initiatives to ensure as level a playing field as possible.

We have lots more to say on this complex yet exciting topic, please join us on March 18th, from 16:00 – 17:00 CET, for a webinar on ‘representation in participatory processes’. Register here and we look forward to welcoming you soon!

Note:

[1] For the handbook on social participation, we have conducted nine country case studies across the world. Interviews with key informants in countries were conducted.

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