Remuneration of African patient partners is an important tool for health justice

The right to participate

The World Health Organization defines social participation as “empowering people, communities and civil society through inclusive participation in decision-making processes that affect [their] health, across the policy cycle and at all levels of the system.”1 This definition echoes the provisions of the human right to participate, which is a fundamental part of the right to health.2 I was encouraged to see that this right was further entrenched by the social participation resolution, adopted during the 77th World Health Assembly in May 2024.

But the legal context raises important questions, such as how people’s participation will be funded and institutionalised by national health departments and global health institutions. There are also questions about how people will be empowered to meaningfully engage, how they will be technically supported to participate, and if and how patients and caregivers will be remunerated for their contributions to strengthening health systems and improving patient outcomes, at home and globally.

Patient partners contribute time and personal resources to help improve health services and outcomes for fellow patients. Their involvement is generally voluntary. Health professionals often portray unremunerated work as a virtuous act of service to fellow patients and caregivers. But expecting people without an anchoring income to give intellectual and physical contributions without compensation is exploitative and unfair, especially when it’s expected of people from poor and vulnerable communities.

I’m an African patient and health equity activist, and I’ve been advocating for remuneration for myself and other patient partners for more than 17 years. My advocacy is often met with rebuttals from health professionals, medical students, and policy makers about which of the patient partners should be paid, how much, and whether it’s ethical to pay them at all. They also question the value that patient partners offer and argue that the money would be better spent on strengthening health systems through other means.

As a lawyer and bioethicist, I think that the ethical concerns are legitimate. They’re particularly important when considering how to remunerate African patient partners involved in biomedical research and clinical trials. We don’t want them to fall foul of ethical guidelines on undue influence, such as the Patient Engagement Open Forum,3 or guidelines from member states such as the South African guidelines for payment of trial participants for research ethics committees.4 I advocate for the neglected group of policy making advocates, clinical chaperones, and patient advisers in local and national health committees.

Lived experience

The question of whether African patient partners add value to the clinical setting or to strengthening health systems is illustrative of the medical paternalism endemic in Africa and global health in general. The view that patients in Africa are not “intellectually robust or sophisticated” enough to engage in high level research or policy making is patronising.

There still exists a hierarchy of knowledge where health professionals’ and policy makers’ knowledge is valued because it’s viewed as objective, verifiable, and universally respected—whereas patient partners’ knowledge is dismissed as anecdotal, emotional, non-generalisable, and therefore lacking in scientific value. This view is short sighted and ignores the importance of lived experience. Many African patients are experts in other academic disciplines or are non-formally educated Indigenous patients. They are experts by lived experience and can contribute to critical knowledge on the pressing health needs of their communities and sociocultural nuances that can help improve overall patient outcomes.

African patient partners also experience exploitative engagement from their European and North American patient colleagues. These colleagues frequently request intellectual contributions on a pro bono basis or extend invitations to speak at global forums without compensation, or they cover only travel and accommodation costs. Our colleagues in the global north earn a salary for collating global patient voices, while most patient partners in Africa don’t have a subsistence income and can’t afford essential living costs or healthcare treatments and services. It’s imperative that we compensate them for their work, to help them afford a life of dignity and realise their human right to economic participation.

Regular and fair remuneration for African patient partners is a health justice and human rights issue. This is especially important because African populations bear a disproportionate burden of diseases, morbidities, mortalities, and the effects of climate change. It’s therefore imperative that they be financially and technically empowered to meaningfully participate in the development, implementation, and monitoring and evaluation of health decisions and policies that affect them. African states and global health institutions have a legal and moral duty to help protect and promote the right of patient partners to participate.5