Participatory democracy and epistemic justice in healthcare: A case study of the Fédération des Professionnèles - CSN and unconventional medicines


Anne Taillefer, Carleton University

The World Health Organization (WHO) has frequently addressed the issue of the crisis in healthcare systems around the world and the variation in legal and political situations resulting in a conjuncture where citizens do not have the same healthcare opportunities. In 2016, it put forward a model for developing the capacity of systems to respond to emerging and diverse health challenges. This approach, organized around the needs of individuals, recognizes their crucial role in shaping health policies and services. In 2018, with the Astana Declaration, the WHO proposed that Member states commit to applying the knowledge of unconventional medicines (UCM) - called by the WHO Traditional and Complementary Medicine - to enhance primary healthcare and guarantee access for all, while respecting their rights, needs, dignity and autonomy. Over 80% of the worlds population already uses some form of UCM, many of which are neither included in health systems nor regulated.​​​​​​ This work draws jointly on two theoretical concepts: participatory democracy (PD) and epistemic justice (EJ). PD is a form of sharing and exercising power, based on strengthening citizens contribution to the definition and implementation of policies, with a concern for sovereignty over their well-being. EJ refers to the recognition and respect for the diversity of knowledges and practices, enabling people to take part in the production and transmission of knowledge. In the healthcare context, EJ may help to foster PD by amplifying and validating diverse voices and perspectives, rather than those of biomedical healthcare professionals alone. This work aims to illustrate how the interrelated theoretical concepts of PD and EJ may be expressed, engaged, and elaborated within a healthcare context to better meet the healthcare needs of populations. To do so, this study examines the case of the Fdration des Professionnles de la Confdration des Syndicats Nationaux (FP-CSN), a key player in Quebec civil society that has been involved through various initiatives in the social, political, and statutory recognition of UCM practitioners (acupuncturists, homeopaths, midwives, naturopaths, osteopaths) since 1987. Using a qualitative single case study approach and with reference to the aforementioned theoretical framework, this work critically analyzes archives, parliamentary commission journals of debate on the subject of UCM, and interview data (n=13) with leaders of associations of these practitioners and of the FP-CSN. Three key examples of the ways in which PD and EJ can be expressed within a healthcare context emerged from the dataset. 1) ADMISSION OF UMC PRACTITIONER GROUPS WITHIN A LARGE LABOR UNION: Remarkably, the FP-CSN (10,000 members from various sectors in health and social services, teachers, technicians, and one of the CSN's federations (300,000 members)), admitted the membership of UCM. It has openly constituted groups of these unlicensed practitioners, at risk of being charged with the illegal practice of medicine, as legitimate, autonomous and organized professional unions; 2) ADVOCACY FOR THE INCLUSION OF UCM PRACTITIONERS IN PUBLIC HEALTH INSURANCE AND COMPENSATION PROGRAMS: The FP-CSN advocated for the inclusion of these practitioners - whose knowledge is usually considered illegitimate in the public healthcare system - for the reimbursement of healthcare services provided (workers compensation, auto insurance); and, 3) ACTIVE REPRESENTATION OF UCM PRACTITIONERS WITHIN GOVERNMENT CONSULTATIONS: The FP-CSN actively participated in many government consultations (e.g., Parliamentary Commissions, the Office des professions du Qubec and the Health Commissioner) giving voice to the distinct perspectives and ongoing contributions of UCM practitioners to healthcare, outside of Quebecs publicly-funded health structures. The actions undertaken by the FP-CSN in favor of UCM associations, highlight its decades-long commitment in Quebec to MEDICAL PLURALISM, i.e., the cohabitation of knowledge and better access to these unconventional health practices. This role illustrates its contribution to the WHO model for universal, equitable, inclusive, and financially viable healthcare, which respects diversity, values citizen participation in collective decision-making and aims for social transformations linked to the development of inclusive policies. Overall, this study shows the necessity of EJ for implementing true PD in healthcare. More research is needed to understand specific mechanisms to better achieve this goal.

La démocratie participative en santé et la justice épistémique: étude de cas de la Fédération des Professionnèles - CSN et des médecines non conventionnelles

This paper will be presented at the following session: