Yogesh Jain paediatrician and public health physician, Priyank Jain internal medicine physician
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The management of chronic diseases requires the sustained motivation of patients to engage in long term adherence and periodic review of the treatment plan. Given this, the assumed primacy of doctors and hospitals as providers of care is increasingly being challenged, and recognition is increasing that health outcomes are “co-produced” by healthcare systems and patients.
Peer support is support from people who have the same health condition as the patients they help—they experience the same challenges of living with the same chronic condition. In poorer countries, peer support groups have been used for mental illness and HIV but with relatively little research on benefits or about applicability to other chronic diseases. Patients in poorer settings are even more vulnerable because they also lack access to healthcare facilities, which can be a further demotivator to the long term engagement needed for optimal health outcomes.
In this essay we describe our experience of using on-to-face peer support groups for chronic disease management facilitated by community health workers in rural central India.
Apoorva Gomber, Eunice Owino, Moses Echodu, Anu Gomanju, Paladie Mategeko, Lauren Brown, Jonathan D. Shaffer
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The current regime of global health governance ensures three things remain true. First, it ensures that the capital allocated to systems of effective caregiving remains deeply insufficient for the health needs of the vast majority of the people in the world. Indeed, at least half the world lack access to essential health services. Second, the fragmented caregiving systems that do exist are largely governed by global institutional philanthropy and their NGOs, usually from the U.S. or Europe, and deploy a logic of “cost-effectiveness”–a race to the bottom in terms of care quality in the name of “efficiency”. Third, this regime of frag- mented charity care in impoverished regions of the Global South often dampens the political aspirations of patients, healthcare providers, and Ministry of Health planners. Sights get narrowed; expectations are reined in because budgets are assumed to be fixed. Failures of imagination combine with deep socialization for scarcity such that substantive change feels insurmountable.
Where do we find hope given this bleak picture? We, the authors, find hope in the fights waged by our fellow patient-organizers. Patient organizers are people living with disease, and those who stand in solidarity with them, who choose to build organizing campaigns and power within a broader constituency to win shared goals. They are central in driving what sociologists have called embodied health movements.
Short (6-minute) video introduces the PEN-Plus model for decentralizing integrated chronic care services for type 1 diabetes, sickle cell disease, rheumatic heart disease, and other severe NCDs that cause tens of thousands of avoidable deaths every year among the world’s poorest children and young adults. Video includes statements of support from leaders of WHO/AFRO, which has adopted a regional strategy to implement PEN-Plus continent-wide, UNICEF, WHO headquarters, the World Bank, and the Helmsley Charitable Trust.
8-page policy brief presents PEN-Plus as a proven model for decentralizing care and treatment for type 1 diabetes, sickle cell diseases, rheumatic and congenital heart disease, and other severe NCDs that cause hundreds of thousands of avoidable deaths every year among the world’s poorest children and young adults.
This 11-minute video shows how decentralizing and integrating chronic care services for type 1 diabetes, sickle cell disease, rheumatic and congenital heart disease, and other severe NCDs has brought lifesaving care to poor rural communities in Rwanda, Malawi, and Haiti … and how this PEN-Plus model is now expanding to other lower-income countries in Africa and South Asia.
