Community participation has had many forms. One of the easiest to recognise is how communities have been involved in the provision of health care. Examples run the spectrum from representation on hospital advisory boards to community activity at all levels, including the direct provision of care.[1]
Our work in Mesoamerica, therefore, has many other historical efforts from which we can learn. One effort in particular illustrates important lessons: the Community Health Center (CHC) model of care that first took root in Boston at the Columbia Point public housing projects. Designed by two physicians, H Jack Geiger and Count Gibson, the health center began as an experiment in a different model of care; “the hospital as we know it is an obsolete and ineffective institution for ambulatory care…” said Geiger in 1968.[2] They were bold indeed, but at the time so was the government. When they asked for a $25,000 grant from President Johnson, they instead received a million dollar grant from the Office of Economic Opportunity as part of the War of Poverty. Years later it’s clear that the investment paid off, as countless studies have demonstrated CHCs’ significant contributions to the health of marginalised populations traditionally disenfranchised from the modern medical system. But beyond merely moving the provision of care to a more accessible location, the CHC hoped to engage the communities in ways that got to the root of what it means to be a community. The grant application in 1965 read: “The need is not for the distribution of services to passive recipients, but for the active involvement of local populations in ways which will change their knowledge, attitudes, and motivation…” Reading this now, over 40 years after it was written, this may seem benign, even a platitude. We should not, however, underestimate just how revolutionary this idea was. In short, the doctors said that a power shift needed to occur – a swing from the notion of doctor as all-powerful, to that of doctor as only one of many participants. If social determinants such as poverty and marginalisation were making people sick, then their health would need to come from a process of overall change, not just the application of an esoteric art by a great individual. Geiger continues: “they will emphasize the formation of community health associations and the training of local residents as community health assistants to stimulate change… Health associations [should be] capable of studying the community’s problems and negotiating with the administration of the health center in a meaningful way.” Ultimately, this value would become institutionalised when CHCs were mandated to have 51% of their board be comprised of patients from the same health center in order to receive federal funding; you can be sure that made more then a few project leaders take notice.
But what does it mean to negotiate in a “meaningful way” with the administration? Who would decide what was meaningful? As one might expect, doctors and administrators did not always ride these shifting tides easily. In many projects, the associations quickly recognised that their participation was often only advisory, and when the decision to take advice or ignore it lay with another group outside of their community, community participation quickly ran the risk of being diluted at best, or empty at worst. This reminds me of the wry saying Cubans have about government mandated community participation: “yes, we participate…. but they decide.”
Perhaps the attendees at Alma Ata kept the issue of community participation vague because they recognised that there were many different ways to implement it; keeping it imprecise would keep the door open for interpretation and, hopefully, innovation. David Werner, author of one of the most influential books ever written in Global Health, Where There Is No Doctor (aka. Donde No Hay Doctor), summed up two possibilities well. In his lecture entitled “The Village Health Worker – Lackey or Liberator,” delivered in Tokyo, Japan just months before Alma Ata, he explained two different models of how communities can participate in health, as evident by how one interacts with another manifestation of community participation, the village health worker. On one hand were the top-down approaches, where professionals and experts determine what poor communities need and then find ways to let community members contribute to these objectives as, in his words, “lackeys” for someone else’s goals.
On the other hand were the bottom-up approaches, where through the process of a participatory Freirean approach to education, community members are taught to analyze their situation, consider possible solutions, and then lead initiatives that will “liberate” them from the clutches of disease and poverty.[3] This latter approach has often been termed the “empowerment” model.[4] While the term “empowerment” has of late become over-used, often being the must-have word in any Global Health application hoping to secure a grant, it goes without saying that this concept has been hard to incorporate in its purest form. By definition, one cannot “empower” someone else – empowerment, instead, is a dynamic process by which a person or group themselves gain increased ability to control the factors influencing their health. But what if this process threatens the status quo? It is always easier for those who currently benefit from business-as-usual to say that one should strive for equity and empowerment than to actually give up control of how resources might be used.
The question remains: if participation is about transferring power, how much is enough? And if the powerful don’t easily give up power easily, which is short hand for resources and the ability to decide how to use them, what is the true golden path to helping communities empower themselves?
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[3] The Freirean approach to education comes from Paolo Freire, perhaps one of the most influential philosophers about education in the 20th century. His most famous book, Pedagogy of the Oppressed, explains the ways in which education can be used as either a tool of oppression or a tool for liberation. Without these ideas, Donde No Hay Doctor would probably have never been written.
Daniel Palazuelos is an associate physician at the Brigham and Women’s Hospital, and an instructor of medicine at Harvard Medical School. He is the clinical director of the Partners In Health-supported projects in Chiapas, Mexico and Guatemala. Partners In Health is a US-based NGO working to bring advanced medical care to the world’s sickest and poorest people. In this role, he lives for half of the year in isolated communities in the Sierra Madre Mountains, training local community health promoters, providing medical care, conducting research, hosting medical student projects, and creating original curricula. For the other half of the year, he lives in Boston and practices inpatient medicine with the hospitalist group at the Brigham.
Competing interests: DP does pro-bono work for Partners for Health, a Boston-based NGO and they assist him with travel support to work abroad.