The right to participation is the “the right of rights”, that is the basic right of people to have a say in how decisions that affect their lives are made.  Article 4 of the 1978 Declaration of Alma-Ata on Primary Health Care states that “people have the right and duty to participate individually and collectively in the planning and implementation of their health care.”
In practice the right to participate was widely popularised by the HIV/AIDS movement in the 1990s. However, peoples’ right to participate in crafting policy decisions that affect them did not become the norm after the height of the HIV/AIDS movement despite the global health community’s constant declarations that they would put people and communities, not diseases, at the centre of health systems and empower them to be partners in their own health, not as passive recipients of services.
More recently, the WHO and other global health institutions recognised the importance of involving patients in co-creating public health policies. However, these institutions tend to frame participation in phrases like “people-centred approach,” “meaningful engagement” and “meaningful stakeholder participation”.. Patients are regarded as “participants” and “beneficiaries” of health systems designed for them. While they are well meaning, these phrases are problematic because they dilute the force of a human rights based approach. More disconcertingly, a non-rights based approach absolves state parties of their duty to ensure that patients are substantively involved in the development of key health policies. Diluted patient inclusion not only absolves state parties of their human rights duties—in respect of the right to health and right to participate, it also renders patients unable to hold policymakers and state parties accountable for inadequately discharging their right to health duties.
AIDS activists realised the value and legal nuance of a human rights based approach. They used the law as a tool for social change to secure themselves a place at the centre of global health forums where potentially life-saving decisions about HIV/AIDS management were being made. They crystalised their human right to participate in the popular war cry—“nothing about us without us”.
A rights based approach is sorely needed as we grapple with the global covid-19 epidemic. In-country and global health disparities are widening and there are growing concerns about issues such as vaccine nationalism which threatens to delay access to essential treatments for millions of patients and health users in developing countries. As was done with HIV/AIDS, state parties, researchers, lawyers and policymakers will need to educate health users that they are legally entitled to substantively participate in setting the agenda for discussion, policy choices, implementation and monitoring and evaluation of health services. State parties must ensure that information and financial resources are made available to entrench and popularise the right to participate as a critical component to the right to health. A rights-based approach will help us to focus on practical health outcomes and on specifying the manner in which human rights should structure both national health policy and global health governance.
While governments and health departments have the duty to educate right bearers on key health related human rights. Rights like the right to participate will remain under-utilised unless health users consistently stake them. Patients must understand that “rights speak” creates legal entitlements and obligations (accountability mechanisms). “Meaningful engagement”, “people at the centre”, “inclusion” and “meaningful stakeholder participation” do not have the legal force and certainty of a human right based approach which is vital to address growing global and national health disparities.
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Kwanele Asante is an African health equity activist and person living with noncommunicable disease. She is a lawyer and bioethicist.
Competing interests: none declared.
This article is part of a series produced in conjunction with the WHO and the Alliance for Health Policy Systems and Research with funding from the Doris Duke Charitable Foundation. The BMJ peer reviewed, edited, and made the decision to publish.
- Halabi Sam Foster, Participation and the right to health: Lessons from Indonesia, Health and Human Rights 11/1, Published June 2009
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