Those of us in the world of global health, or global development more generally, have probably heard it before – again and again: Leave No One Behind. That is a core promise of the UN Agenda 2030 for Sustainable Development and the Sustainable Development Goals that the Agenda contains. If we are serious about leaving no one behind, we need to leave no one out. Or, more precisely, we must not leave people out of the process of making decisions that affect their health. And more specifically still, people who are now being left behind must not simply be included as some among many who have a role in these decisions, but as the people taking the lead in them. As straightforward as this may sound, it may be revolutionary.
The centrality of this empowering participation is (not coincidently) the first of seven principles of the health equity programs of action framework and its implementation guide that the O’Neill Institute launched last month. The framework offers a systematic, systemic, and inclusive approach to health equity, one aimed at truly leaving no one behind when it comes to the opportunity to live a long and health life. The seven principles are:
Empowering participation and inclusive leadership, with people from marginalized and disadvantaged populations part of the leadership of all processes related to the programs of action;
Maximizing health equity, requiring addressing all health issues and structural determinants of health inequities, and basing programs of action on evidence;
Health systems and beyond, covering the health sector and the full array of social (including cultural), environmental, economic (including commercial), and political determinants of health, including through intersectoral actions;
Every population counts, systematically addressing each population experiencing health inequities;
Actions, targets, and timelines, with specific actions linked to timelines for carrying them out, along with measurable targets;
Comprehensive accountability, encompassing but extending well beyond monitoring and evaluation to also include a comprehensive suite of health accountability mechanisms, and;
Sustained high-level political commitment, necessary to ensure sufficient resources and intersectoral action and coordination, as well as successful implementation.
Why did we put participation first? There are plenty of reasons. If decades of efforts to reduce poverty and improve health have any overriding lesson, it is that imposing solutions, that coming in from the outside and saying, “here’s what will work” without involving the communities who are supposed to benefit in the process, is a good way to implement solutions that won’t solve anything. People have the most intimate knowledge of the obstacles to good health that they face, what their needs are, and how these can be met. Policies that incorporate their perspectives will have the best chance of making a difference. Participation can also build trust in the health system; distrust may deter people from seeking needed services.
People also know their own priorities – which may or may not be those that are in vogue in the global health community (and which, in turn, influence national health ministries), or that one might guess from measurements like disability adjusted life years (DALYs) or quality adjusted life years (QALYs). For example, their priority might not be this health issue or that one, but might be instead the able to attend a health facility where they are treated with respect, with dignity, rather than facing discrimination or other mistreatment.
Participation in the decisions and policies that affect their health will also help enable people hold governments accountable. Being part of the process of making these decisions will contribute to people’s knowledge about them, what laws and policies entitle them to, and thus whether that which they are formally guaranteed matches their experiences. People now being left behind must have the opportunity to be part of accountability processes, so that their experiences inform understandings of how laws and policies are being implemented. Not only will this help ensure the credibility of reporting, but it will also provide a greater understanding of the causes for any shortcomings and what changes are needed to overcome them.
What is more, participation is people’s right. The Committee on Economic, Social and Cultural Rights, which monitors implementation of the International Covenant on Economic, Social and Cultural Rights, has is unambiguous that the right to health includes “participation of the population in all health-related decision-making at the community, national and international levels,” (General Comment 14, para. 11) including, in particular, “participation in political decisions relating to the right to health taken at both the community and national levels” (General Comment 14, para. 17). The SDGs themselves include a specific target (16.7) on participation: “[e]nsure responsive, inclusive, participatory and representative decision-making at all levels.”
All of this would have been enough to justify our choice to highlight participation by placing it as the first principle of the health equity program of action framework. But there was one other decisive factor: Participation could contribute to changing power dynamics.
WHO has recognized (p. 153) that “empowerment and meaningful participation constitute one of the mechanisms for the redistribution of power.” And that redistribution of power is one of the – if not the – single most fundamental need in achieving health equity. As the Commission on Social Determinants of Health noted in its landmark report back in 2008, health equity demands that we “tackle the inequitable distribution of power, money, and resources” – and ultimately, it is power that determines the distribution of money and other resources, and the more specific determinants of health.
Yet today, the empowerment that could come through meaningful participation, through people whose health is at issue being part of processes that determine health policies, is largely absent. Several years ago, the O’Neill Institute coordinated the community engagement piece of a project called Go4Health, which included consultations with members of marginalized communities in nine countries in Africa, Asia, Latin America, and the Asia-Pacific region regarding their perceptions of the right to health, including on what sort of say they had in policies that affected their health. As summarized in our findings in 2013, despite an overwhelming desire among communities members “to participate in decisions related to their health….Authorities rarely ask community members their views, and when community members do seek to express their views, they find that they are not heard. The ‘government does not pay attention’ encapsulates the[ir] typical experience…contributing to a feeling of powerlessness.”
Often, participation is still seen as a luxury – valuable, but when timelines or budgets would make it difficult, something that can be, and frequently is, put aside. It may be viewed as too difficult, without a clear roadmap for what it should look like. Or participation will take a weakened form, such as consultations, seeking input, but not actually enabling people’s whose health is at issue to have meaningful decision-making authority.
Often, too, the value of participation is measured in the outcomes that we – the global health community, policymakers – are interested in, rather than in the outcomes that people whose lives are affected for better and worse value. Did a policy lead to greater programmatic uptake? Did participation reduce maternal mortality? These are certainly extremely important. People value their health, and have a right to it. But health is not all that people value. Policymakers can only be assured that the purposes and values behind policies will be based on what the people affected by these policies value if the people who will be affected are involved in developing them. And here, one thing they very often value greatly that is not reducible to health outcome statistics is meaningful participation in and of itself, having some real level of control over their lives and decisions that affect them – having their dignity as full and valued members of society respected. After all, in your own life, don’t you often want the opportunity to do, and not only be done to?
Creating the space for people whose perspectives and rights are frequently neglected to be full partners in setting government policies that affect their health will mean providing power, including leadership roles, to communities who otherwise are rarely asked for their views, and whose views are typically neglected even when they have a nominal say. This means their having considerable control – including through leadership roles within decision-making bodies – over the decisions that will have an effect, and often immense effects, on their lives, and in shaping the laws and policies of the entire nation. This will mean newfound power. People who are taught that they cannot effect change will see that they can – perhaps opening up the possibilities for their advocacy and power-shifting in other realms. Indeed, the process of developing health equity programs of action could serve as a model for policymaking in other areas.
Being central to the processes of developing health equity programs of action and gaining the understanding that will come from participation, along with their key role in accountability processes, should have another benefit. It should help empower people from marginalized and disadvantaged populations to be confident advocates for their own health.
Empowering participation – having people from marginalized and disadvantaged communities among the key decision-makers in health policies – must be at the center of efforts to improve health equity. It is principle number one.
The views reflected in this expert column are those of the individual authors and do not necessarily represent those of the O’Neill Institute for National and Global Health Law or Georgetown University. This blog is solely informational in nature, and not intended as a substitute for competent legal advice from a licensed and retained attorney in your state or country.