“Participation provides the opportunity for people living in poverty to be active agents in their own destiny” – Magdalena Sepulveda, Former UN Special Rapporteur
For over fifteen years we have seen, with our activist-eyes, the good, the bad and the useless of efforts towards increasing the participation of civil society, particularly of people most-affected by health inequities, in the decision-making bodies within global health governance. With the exception of the response to AIDS, it appears to have been mostly the useless, and the non-existent. As IMAXI Cooperative, a NGO comprised of people living with life-threatening diseases and disabilities from around the world, we are keen watchers of the ‘system’, from policy development through to programme implementation. As public health users from marginalised communities, we are well-placed to witness the negative effects of the disconnection between decision-makers at the ‘top’ and those so in need of the realisation of their right to health on the ground.
While we have had countless sound-bites about the importance of being inclusive and of “hearing the voices of the voiceless”, the rhetoric has hidden the reality of exclusion. It appears that genuine participation of affected people and their civil society organisations is missing across most of the institutions that direct global health governance. A few online polls or consultations for those privileged to have access to fast broadband internet, or streaming WHO meetings on UN WebTV does little to “ensure responsive, inclusive, participatory and representative decision-making at all levels”, as called for in Sustainable Development Goal 16.7, adopted by the UN. Inviting a token ‘voice’ to speak briefly at an international conference does nothing to advance the real participation of the communities.
Although meaningful participation is a key principle of human rights, explicitly stated in the Right to Development among other UN resolutions, the people most impacted by health inequities seem to be excluded from having a say on decisions and policies that directly affect them. The ‘Common Understanding’ on implementing a human rights-based approach, adopted by all UN agencies including the WHO in 2003, further highlighted the principle of meaningful participation at all levels of decision making and the importance of its implementation. The apparent lack of participation ‘at the table’ of policy-makers is not only the missing element in efforts to achieve the UN’s Agenda 2030, but it signifies a failure of the UN agencies to fulfil their agreed obligations to implement a human rights-based approach (HRBA).
In response, the IMAXi Cooperative is now mobilising. We have decided to launch an initiative to develop mechanisms for meaningful participation and a system for accountable representation of the affected communities in global health governance. We are bringing together activists, academics, public health officials and experts from around the world, to study the current state of policies and practices of health-related multilateral agencies including the WHO, UNDP, UN Women, UNAIDS, UNICEF, World Bank, and two foundations, Gates and the Global Fund. We will then use this knowledge as fuel to forge a tool to make ’seats at the tables’ accessible and accountable to affected communities.
“What doesn’t get measured doesn’t get done” – Dr. Margaret Chan, Director General, WHO
There is no data available at present on the quantity or the quality of participation within global health governance. So the IMAXI Cooperative has been reviewing its previous informal studies, also known as ‘Reality-Checks’, and is planning a participatory research project — a diverse team of investigators, analysts, co-authors, and mentors are collaborating on publishing a ‘report-card’ of the health-related agencies and an agenda for the incoming Director General of WHO. The following abstract, which has been accepted to be published in a special edition of the journal Global Health Governance, outlines the study:
This train will leave no one behind: Meaningful participation and accountable representation of communities in global health governance
The study will report on an assessment of the current state of the implementation of the Right to Participation by the key institutions that govern global health. It identifies obstacles to, and opportunities for the advancement of the meaningful participation and the accountable representation of those most affected by the decisions and policies of these bodies. As the World Health Organization (WHO) is mandated by its Constitution “to act as the directing and co-ordinating authority on international health work”, the paper will place particular attention on WHO policies and practices, while providing a comparative study of other health-related UN agencies, as well as other multilateral institutions and major foundations with substantial influence on global health governance. The paper arose through a participatory research approach which brings together a range of academic disciplines as well as public health officials and community activists to inform a broad understanding and dialogue on the benefits, and best practices in the implementation of the right of participation in global health governance. Its methodology includes interviews with key ‘actors’ and document reviews covering the period of 2000 to the present. The paper provides a base line for annual ‘report cards’ on the progressive application of the meaningful participation and accountable representation of affected communities in global health governance—which the authors argue, is necessary to better assure that no one is left behind.
Over the coming year, we will conduct further research, produce papers, share ideas, build partnerships, organise a series of advocacy events (including at the World Health Assembly and online via #WHO4ALL), and develop an innovative app. We also intend to facilitate the establishment of a new Swiss registered NGO in Geneva, the Global Alliance for Meaningful Participation and Accountable Representation (GAMPAR), to galvanise interest and support towards institutionalising meaningful participation.
The challenge is colossal, but developing a system that empowers community participation in policy-making and practices is essential if SDG3 will be more than just empty mantras and slick slogans. It’s time for a civil society mechanism to make ‘Nothing About Us Without Us’ a reality in global health governance.
Welcome on board — Come collaborate & participate!
Project Outline – Version 1 (Comments Welcome)