Coming Soon: All Aboard Survey


SurveyAll Aboard Update:  We’re now busy designing a survey on the views of civil society, as part of this research project. Your suggestions and inputs on this questionnaire would be warmly welcomed. 
—————–

What’s Meaningful Participation? A key question that requires many people to answer.

A diverse and dynamic group of activists, academics and public health officials are now collaborating on a new  project — All Aboard! This initiative, spearheaded by the IMAXI Cooperative, combines scientific research with the practical development of a new participatory tool that aims to make “Nothing about us without us” a reality in global health governance. We believe that by advancing the meaningful participation and accountable representation of the most affected communities within decision-making institutions, fewer people living with life-threatening and life-changing diseases / disabilities will be ‘left behind’ and left out of programmes to improve health and well-being.

Before tools to claim ‘seats at the tables’ of the policy-makers can be forged, we seek a broad-based consensus on what meaningful participation actually means. Below are a few elements – we like to know what else can be added to the mix.

• Meaningful participation is based on the principle that those who are affected by a decision have a right to be involved in the decision-making process.

• Meaningful participation includes the promise that the public’s contribution will influence the decision.

• Meaningful participation promotes sustainable decisions by recognising and communicating the needs and interests of all participants.

• Meaningful participation contributes broad, long-term stake-holding to policy development when supported in a sustainable manner.

Read more…

All Aboard

All Aboard!What’s ‘All Aboard’? 

Founded and driven by poor people living with life-threatening diseases and disabilities from around the world with a shared experience of having to struggle for their right to health, the IMAXI Cooperative is a small international NGO established in 2010. We’ve come together, in common cause, to help our peers to empower themselves and their communities so that others might not also be denied their rights.

Drawing on decades of our collective experience as community and global health activists, we design and develop collaborative tools and projects, while advocating for the greater participation of those most affected in the policy-making process and implementation of programmes. Our members have seen first-hand how a ‘seat at the table’ of decision-makers can bring substantial improvements to the health and well being of their communities. We have also seen the deaths and suffering that comes with not having any voice in how public health services are designed and implemented.

As a ’volunteer-only’ non-profit organisation, working from our kitchen tables or cyber-cafes and funded only by our own donations, we have focused on forging tools that do not require substantial funding to utilise. With a network of other un-paid yet very engaged activists in diverse communities that help out with different initiatives, we have been able to advance an independent ‘human rights-based approach’ to health and development even with our very limited finances. However, we are now beginning an important global health governance initiative that will require more resources than we have ourselves. In ‘UN-Sloganese’, we aim to dynamically fuse the top-down “Leave No One Behind” with the bottom-up “Nothing About Us Without Us”,  wherever policies that impact the health and well being of marginalised communities are made.

‘All Aboard’ is a two step research and development project that will first assess the state of community participation in decision-making bodies within key institutions in global health, including the United Nations agencies (WHO, UNAIDS, UNDP, UNICEF, UN Women) and two major foundations, the Global Fund and Gates, and secondly, to apply this knowledge to the programmatic advance of meaningful participation and accountable representation. First the scientific research, then the evidence-based development.

We have gathered together a brilliant group of almost twenty activists, academics and public health officials and have begun to conduct a methodological, scientifically robust study. The findings of this collaborative research will be published in the autumn of 2017 in Global Health Governance, the “Scholarly Journal for the New Health Security Paradigm”. The Abstract, which has been accepted, can be seen here.

Read more…