What do we mean by this topic?
• Much of the mistrust, skepticism and criticism of participatory processes lies in the (perceived) lack of participants’ representativeness, i.e. the ability to legitimately speak on behalf of their constituency.
• Often the process of selecting participants is not very transparent.
• In addition, the design and format of participatory processes influence the ability of representatives to effectively engage (in a representative way) during deliberations.
• Throughout the various country case studies, we note challenges in finding the ‘right’ representatives who are not only considered legitimate but also have the skill set to represent the public or constituency interest.
Why is it important for policy-makers to address this topic?
• It is often stated in the literature that the issue of representativeness of participants is one of the main barriers to initiating or continuing participatory processes.
• Policy-makers should be aware of the multiple publics and groups within society (e.g. lay people, community representatives, patients, civil society organizations, lobby groups etc.) who can take on various roles and also represent potentially conflicting interests for health decision-making.
• The roles of participants/representatives are not always clearly articulated by those organizing participatory processes; neither is a reason provided why their feedback is sought, resulting in difficulties for invited participants to claim their legitimacy to speak on behalf of the public.
• A well-organized participatory process can bring the expected added value to policy-makers when the format and design, as well as the participant selection process, lends legitimacy to those at the table.
Selected key messages
• Representation in participatory processes in health do not generally aim for statistical representation of the full population at large (i.e. a selection process based on demographic characteristics such as age, ethnicity, education, and income).
• Representativeness can be achieved through a balanced and transparent selection strategy but also by designing a participatory format which lends credibility to participants and enables them to represent the public or constituency interest.
• Strategies are needed to balance out groups who can dominate civic space and crowd out other voices (for example, lobby groups, international civil society organizations, etc.).
• Representation can lead to further inequities if a particular focus is not placed on specifically studying who is not participating and subsequently reaching out to marginalized groups.
• Participatory process design should include the provision of balanced factual information, packaged in an accessible and simple format, to be able to understand the issues at hand from different perspectives.
• Participatory exchanges should allow the broad range of views to be expressed. The format should encourage listening. One of the objectives should be to allow participants to transcend their own individual experiences and potentially more narrow interests into a ‘common good’ perspective (collective view, ‘public’ expertise).
• A neutral facilitator during deliberation processes is crucial to balance out power relations especially between experts and non-experts, and ensure equal participation among participants.
At this stage, do you have any comment on the content of this chapter? How does this resonate with your organisation?
Are there any gaps?