France's Citizen Consultation on Vaccination and the Challenges of Participatory Democracy in Health

"Drawing lessons from this precedent is crucial in a context where public health authorities across the world struggle to find the solution to contemporary vaccine hesitancy..."

Vaccine-related controversies emerged at the end of the 1990s in France, and vaccine hesitancy is on the rise there. The French government organised a "citizen consultation" on vaccination between January and October 2016 to involve the wider public in policymaking and foster public acceptability. The purpose of this article is to present how this citizen consultation was organised and to analyse the tensions at its core between the democratic and scientific principles. With this case study, the researchers aim to further understanding of how the concrete organisation of a participatory device determines the contents of deliberations, the quality of the information gathered, and how much democratic legitimacy authorities can gain in the process.

The consultation was conducted under the supervision of an ad hoc board of 16 people composed of medical experts, representatives of state institutions, members of civil society, and social scientists ("the orientation committee"). They translated this framing into a set of questions meant to guide the debates: 1) what are French people's perception of vaccines? 2) how can we facilitate vaccination? 3) in which conditions can mandatory vaccination be acceptable? 4) what do you expect of research on vaccines? 5) what are your recommendations to improve trust in vaccines? 6) what are your recommendations to improve vaccine coverage? Santé Publique France, a public agency under the supervision of the French Minister for Health in charge of monitoring the French population's health and promoting health-inducing behaviours, was in charge of the logistics of the citizen consultation. The setup aimed to include the lay public in 5 ways: 1) a comment section on the consultation's website opened between September 14 and October 14 2016, 2) a citizen jury composed of 22 laypeople randomly selected by a polling agency, 3) a jury of 16 medical professionals selected in the same way, 4) a qualitative study consisting of focus groups and interviews with laypeople and medical professionals, and 5) a quantitative study of vaccine-related perceptions. It also integrated members of civil society at various stages and levels of the process.

The committee's recommendations at the end of November 2016 included: making vaccines free of charge and more easily available; allowing pharmacists to vaccinate; increasing transparency, especially by facilitating access to the data of clinical trials; putting more effort in communication towards the public and training of medical professionals; and developing research on a variety of aspects of vaccination. The most significant recommendation was to extend mandatory vaccination to all childhood vaccines temporarily.

The analysis of the experience was based on a mix of qualitative and quantitative methods:

• Using methods from computational linguistics, the researchers investigated the 10,435 public comments posted to the website. (The organisers of the consultation were particularly transparent and gave the public online access to documents detailing the workings of this consultation.)
• The researchers gathered all articles pertaining to the consultation published in 7 national newspapers (Libération, Le Parisien-Aujourd'hui en France, Le Monde, Le Figaro, La Croix, L'Humanité, Les Echos). They selected all articles containing the fragment "débat" or "Concertation" and the fragment "vacc" published between June 1 2015 and February 1 2017. The search generated 48 articles.
• The researchers looked at the contents 299 French-speaking vaccine-critical websites.

The results of this examination are organised according to the following topics:

• Participatory democracy in France and the surge of vaccine hesitancy - One of the points made here is that public health experts and thinkers of participatory democracy have highlighted the possible conflict between democratic principles and the requirements of a rational debate based on facts and informed by science.
• The imperium of science: setting boundaries to public discussion of vaccines - Several elements of the consultation setup are notable: 1) Members of the orientation committee (half of whom were doctors and medical experts) were given the latitude to select among the proposals and arguments formulated during debates to compose the final report. The committee did not include vaccine critics and comprised several people known for their public defense of vaccination. 2) The juries were trained in the basics of vaccine science before deliberating on the subject. 3) The orientation committee was intent on keeping the debates within the boundaries set by the Minister's mission statement. The consultation was tasked with answering the question of how to restore trust in vaccination and therefore raise vaccination coverage.
• How vaccine criticism emerged in the consultation - For example, vaccine critics were included in the list of people automatically auditioned by both juries. Yet the choice of framing meant that it was very difficult for the issues of vaccine safety and of the list of recommended vaccines to become central in debates. More generally, this choice of setup seems to have been effective in preventing this consultation from sparking an even larger debate over the science of vaccines - the period of the consultation was marked by very little media coverage of vaccine-critical mobilisations.

The researchers explore the idea that the consultation was a missed opportunity to gather information on the acceptability of vaccine mandates. In their estimation:

1. Participatory devices can help deflate controversies by helping find common grounds with critical actors from social movements. This was not the case here.
2. The citizen jury and the web platform were supposed to be the two main pathways to making this a "citizen" consultation. But the committee had to go beyond or against the information gathered through these means for two of their essential recommendations: the extension of vaccine mandates and maintaining aluminum-based adjuvants.
3. "Not only did the orientation committee and the Minister for Health confuse participation with public opinion analysis, they also fell prey to some classical biases in public opinion research. They asked the public 1. a different type of question than the ones they were likely to be interested in or have an opinion about and 2. to analyze itself rather than produce the judgments necessary for the analysis..."
4. The citizen jury and the website could have given much information on when and how mandates can be acceptable in France. The framing of the debate largely overshadowed this issue.

In short: "The combination of a narrow framing of debates (how to restore trust in vaccination and raise vaccination coverages) and a specific organization (latitude was given to the orientation committee with a strong presence of medical experts) was successful in avoiding legitimizing vaccine critical arguments. But these choices have been at the expense of a real reflection on the acceptability of mandatory vaccination and it did not quell vaccine-critical mobilizations."

In conclusion: "The 2016 citizen consultation on vaccination in France is a reminder of the difficulties of debating on issues for which there is a strong consensus in the public health community. By providing a platform to discuss issues pertaining to vaccine hesitancy and vaccine-related controversies it showed that the institutional tools of participatory democracy can provide a meaningful contribution to public health decision-making." However, the researchers suggest that public health officials must be aware that when trying to increase democratic participation into their decision-making process, how they balance inputs from the various actors and how they frame the discussion determine whether an initiative like this will provide meaningful information and democratic legitimacy.