Lives Saved, With a Little Help from Friends
In November 2000, Jharkhand was carved out of Bihar, a state in eastern India, to be a separate state to fulfill the aspirations of its people and [End Page 109] allay their feeling of alienation. It was a good time for me to reflect on how best I could contribute. In 2002 Ekjut, a registered development organization, was set up by myself and other like-minded colleagues. Ekjut, which means "togetherness," was the outcome of a longstanding desire to do something on our own, something that was close to my heart—doing something for and with the people I had grown up with. An invisible cord kept me attached to this region of India and after stints with a few development organizations within and outside the state, my wife, Nirmala, and I decided to relocate to a village near my hometown, Chakradharpur.
Chakradharpur is a small railway township in South Bihar where I spent all my childhood and days of schooling. Beyond the periphery of this township and its satellite market place, live indigenous people, the Adivasi, in villages and hamlets. Even as children we could appreciate the government policy that protected them in the sense that their ancestral lands could not be acquired by Dikus, the non-tribal people living in the towns and cities. The un-spoilt bounties of nature protected and preserved by the original inhabitants of the land—the Adivasi people—was there for all of us to see and enjoy.
A rumor that a doctor couple was building a nursing home led to a regular flow of men, women and children to our unfinished home with all kinds of ailments, including medical emergencies. It was becoming increasingly difficult to cope with the workload of constructing the house and at the same time—overwhelming to see children dying in our home, which was never meant to be the hospital that the villagers thought it to be. They were reluctant to visit the government hospitals, which were primarily meant to serve poor people and their attitude could be summarized in just one word—fatalism. We wanted this to change—they somehow needed to understand their rights and entitlements. The public health care system had to be strengthened and Nitmala and I wondered how our work could make this happen.
The Adivasi people were soon to become partnering communities with Ekjut. It did not take us long to realize how unprotected they were. We had a vague idea that we wanted to build healthier communities. Providing full-time curative care was not an option; it was also beyond our means. Knowing that strengthening the health system would take time, we hoped that our community-based work would strengthen the demand side, since even the minimum services that were available were grossly under-utilized.
India is home to about 10 million tribal people. We had seen and also knew that their health status was poor and that tribal people have the disproportionate burden of child mortality, malnutrition, malaria and death in childbirth. But we could not find a reliable existing data base that could guide our work. The health status of women and children soon became Ekjut's main concern.
We wanted our work to generate knowledge that would be relevant in a wider context. Adivasis are not a monolithic entity and our evidence needed to grow from working with several different tribal groups. We needed to build our research capabilities and willingness to work with several different indigenous groups, as well as, the poor people living alongside them in different districts. A collaboration with University College of London was soon to follow. Professor Anthony Costello who was my teacher more than a decade back, invited me to partner with his department and jointly bid for a grant. This grant was likely to come at the confluence of several interesting developments. First, the self-help group movement in India had made a substantial jump and such groups existed in almost every village. Second, a grassroots organization called PRADAN was working with women's groups to strengthen their livelihoods in several states of India including our district. PRADAN shared with us that they realized that the savings accrued by the women's groups members were being frittered away for irrational medical treatment and people were being misled by the "crookery and quackery" of informal and private medical practitioners. Third, a visit to Narangabeda, a neighboring village with an existing women's group and our interaction with its secretary helped us to understand that the health situation of women [End Page 110] didn't seem to correlate with the small increase in income. They were happy to allow us to pilot a monthly meeting with their groups deliberating on health. Invitations for conducting similar pilots came from two more villages. Finally, the possibility to work with Professor Costello's wonderful multi-disciplinary team using his principle of, "No survey without service," was an attractive proposition.
We decided to work with the self-help women's groups while opening them up to broader range of people. Extending the scope and methodology of our work to benefit people living in the underserved areas of three bordering districts of Jharkhand and Orissa states was aided by a parallel and pre-existing approach of participatory learning and action and the use of simple storytelling. We co-crafted contents of a meeting cycle, integrating our domain knowledge of health, applied some creativity and proposed applying this community mobilization approach in about 200 villages and to evaluate the impact of the intervention. We successfully bid for the grant and completed a cluster-randomized-controlled trial—comparing the difference between communities where our Ekjut team worked with women's groups and where it did not.
The participatory meetings provided a forum for communities to develop a common understanding of maternal and neonatal problems, as well as, locally acceptable and sustainable strategies to address them. The combination led to an astounding reduction in newborn deaths by 45 % in the last two years of the trial that ended in the middle of 2008. The reality is that the newborn death rates after this impressive improvement—about 30 per thousand live born births—was still relatively high in comparison to better off places. The groups had succeeded in plucking the low hanging fruits and the poorest benefitted the most. The question we asked ourselves in 2008 was—should we try additional "packages" and intervene further in our intervention villages and see if we are once again successful? We decided to go to newer areas instead, so that quick gains could be made by other communities in similar circumstances.
Ekjut continues to work with more than 1,000 women's groups in many underserved areas in several districts during its tenth year. We went on this expansionist spree because we knew from experience that successful research findings are not easily accepted and take many years for policy makers to adopt. Before we did this we extended the benefits to the villages in our controlled areas, as we had commitment to them that we would do if we found the intervention effective.
It was also proving difficult to convince professionals that this almost dumb-foundingly simple method was able to reap more benifits than the usual public health delivery mechanisms. The latter seek impact through linear administration of programs—from implementers to recipients. The Ekjut trial adopted a circular method, where implementers, facilitators, group and community members themselves became planners, designers and recipients of learning.
In the coming days we will continue to look at the role participatory interventions with women's groups can play to improve the quality of health services and health and nutrition beyond the perinatal period. We will also look at the role of such groups in influencing other developmental issues such as women's decision-making power. It is our strong conviction that the voice and agency of people should guide the decisions that shape their lives.
While informed consent provisions in our studies ensure that women who agree to be interviewed are able to make a free choice for giving us legal permission to interview them, we had to be completely sure that we never take advantage by misleading them into believing that the invitation to be interviewed during the study would somehow lead to an opportunity to receive some kind of medical services from Ekjut. All our data collectors are from the communities of the interviewed women because of our apprehension that an external researcher might be viewed as someone in a position of authority and there could be reluctance to refuse participation, if they wished.
During the entire course of our work, we debated the idea of "obligation" to the community. Should [End Page 111] this be judged from the end of the project findings only? We cannot guarantee that our interventions will always be successful. There was less argument about the fact that community empowerment (which was our 'intervention") can be an end in itself and any positive results would be a bonus.
We must also be concerned about our other obligations to the communities because we employ longitudinal surveys and therefore feel obliged to communicate the results—like the status of health of the vulnerable—at appropriate points and at earliest possible times to the participants and government agencies.
Maternal deaths may be a rare event for a village or a hamlet but in our office we couldn't be blind to the regular reports that were pouring in. We had to break the rule of waiting for our trial to be over and published a paper about the high maternal mortality in our districts. We engaged with print and television media, hoping to influence and improve the services available in these regions. We also shared our findings with Paul Hunt, UN Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health, during his mission to India in December 2007 to examine maternal mortality through the lens of the right to health. Witnessing high levels of maternal mortality also made us think more generally about the need to use data collected during trials for advocacy when gross inequalities in health are visible. Trials tend to focus on a small number of outcomes but collect a lot of other data which sometimes does not get used. We felt that using this information would be important because mothers gave their time to participate in surveys and the data could be used productively for advocacy to bring attention to pockets of the disadvantage, which do not always get picked up in national surveys.
In spite of the growing consensus around the four cornerstone interventions to reduce maternal mortality—family planning, skilled birth attendance, effective referral networks and emergency obstetrics care—we found these aspects grossly lacking in Indian villages. In subsequent years, some attention to these has led to a reduction in maternal deaths in India. Overall coverage of services has improved during the last five years but the coverage estimates can be misleading if distribution is not taken into account. Soumik Banerjee , a young engineer working with indigenous people, keeps sending case histories of maternal deaths among the underserved populations where he works. They live along the slopes of a hill called Sundar Pahari (literally meaning the beautiful mountain) in another district. Therefore, we know that things may be bad in other underserved pockets.
The average state and national coverage of services in India appears to be improving and even may be adequate in some places, but is insufficient when analyzed in detail and from the perspectives of the poor and marginalized. This uneven coverage can only be dealt with by increasing public sector investments in health and education in the underserved areas.
More encouraging for us has been the fact that community mobilization through women's groups seems to have hastened the speed of decline in maternal deaths in hundreds of villages where the groups are active. The increased self -efficacy, problem-solving skills and strengthened network of marginalized communities might be helping people to make the best of available services and making more timely, and thus life-saving, decisions. There is a commitment from the government of India to invest more in public health during the next Five-Year Plan, its twelfth such plan, and focus on universalization of healthcare services. Our work in the underserved pockets of several districts of two states proves that together with universalization, efforts should also be made towards enabling marginalized communities to come together, listen to their voices, and ensuring that these are acted upon to address inequities in health.
Ekjut has also found it difficult to communicate the state of under-nutrition among children to their parents and to the communities. Even in seemingly homogenous societies, the poorest carry the heaviest burden of disease, malnutrition and premature deaths. Our team members have come up with interactive games and stories that help to sensitize better-off people towards building inclusive [End Page 112] societies, but the concern remains that the structural problems can't be permanently addressed through mere improvement of people's conditions—their overall status must improve.
It is possible to mobilize volunteers in health promotion programs—if we avoid victimizing and stigmatizing individuals; are sensitive to ethnic and cultural practices; are willing to assist communities in making friends with one another; and help them come up with their own stories of change to replace the old ones when necessary. After all, story telling originated in the forests and hills. [End Page 113]