Gross inequalities exist in access to effective health care—chasms that lead to unnecessary suffering, harsh indignities, and “stupid deaths.”1 When Nyaya Health started working in the Achham district of remote Far Western Nepal in 2006, at the end of a brutal civil war, there were no allopathic physicians for a population of over 500,000 people. The public sector medical system had largely collapsed. The dearth of health care services was glaringly obvious: even the more accessible communities were located over 14 hours from the nearest intensive care unit and 30 hours from Kathmandu, where most advanced medical care in Nepal is delivered.
Health statistics in the area painted a grim picture: malnourishment affected over 60 percent of children, a rate unparalleled anywhere in the world including sub-Saharan Africa; only 0.5 percent of deliveries took place in a hospital, and nearly 1 in 100 pregnancies resulted in the death of the mother; 80 percent of the population lacked access to safe water and sanitation, leaving more than 60 percent of people infected with intestinal worms; and the prevalence of tuberculosis was staggering.2
In such an extreme setting of poverty, our team at Nyaya Health focused initial efforts on the recognition of health as a human right. Indeed, our very name, Nyaya, means “justice” in Nepali. Working within the public sector made logical sense to the staff and volunteers from our diverse organization—from local Nepalis, to those who grew up worlds away in Kathmandu, to expatriates from around the globe. Diseases epidemic among the poor—pneumonia, malnutrition, emphysema, HIV, tuberculosis, maternal mortality—are not effectively addressed by the private sector alone since treatments are not lucrative and discrepancies in the quality of information provided to patients extreme. This is especially true as unregulated and under-trained private providers peddle expensive and ineffective treatments (most commonly, inappropriate antibiotics). As such, the government must play a leading role in financing, regulating, and ensuring the delivery of health as a human right.
Yet, the public sector in many countries, especially Nepal, is particularly weak, with absenteeism, inconsistent medical inventory, poor maintenance, and crumbling infrastructure all commonplace. Private actors, such as Nyaya Health, bring a needed piece to the table in their ability to innovate, to mobilize additional resources, and ultimately to be more responsive and accountable to local conditions and communities. Effective health work thus requires public-private partnership. For example, Nyaya Health’s hub of operations, a district-level hospital at the top of one of Achham’s Himalayan foothills that sees over 40,000 patients a year, is government-owned but privately managed.
While Nyaya’s mission continues to be rooted in the belief that health care is a human right, our approach has evolved to be driven by an enterprise mindset. Beyond partnering with the public sector, we have come to see that truly effective health care delivery involves: improvement to remote rural energy and water systems; strategies to retain staff in a harsh environment; maintenance protocols to avoid crises in places where technicians are unavailable; and extensive networks of lay health workers to identify and follow patients.
In this context, innovation in systems design is largely about identifying simple, feasible, and durable strategies to address challenges. Constant, iterative testing, with the understanding that long-term success can only occur through multiple instances of failure, is required to build these systems. This is an entrepreneurial philosophy known as “fail forward.”3 Failure is intrinsic to rural health care delivery and speaks to the importance of staying rooted in specific communities in order to develop systems-level solutions that emerge over time. In Nyaya’s case, the first health care intervention in a new setting, from piloting systems of inventory control to systematizing follow-up care procedures, are often not in their best and final form.
At the same time, much remains unknown about how to implement and sustain health care delivery systems. Nyaya pairs its embrace of failure with rigorous studies of each innovation in order to understand what works best. To do this, we use implementation science—the systematic study of interventions aimed at delivering technologies and medicines.4 While the prescriptions remain highly debated, it is clear that evidence-based interventions to improve the health of communities are woefully underused in settings of extreme poverty.5,6 The goal of implementation science is to rigorously assess strategies that deliver health care in some of the harshest, most poverty-stricken places on earth.
Finally, through public sector partnerships that center on health as a human right, enterprise-driven innovation, and scientific evaluation, we have realized the need to develop effective channels for advocacy and dissemination. Social media offers new possibilities. For instance, Nyaya has been among the first organizations to successfully “crowdfund” rural referral care through a partnership with Watsi, a website that matches individual online donors with people around the world in need of medical procedures.7 We have subsequently expanded to Kangu, a similar service that crowdfunds safe pregnancy and delivery care.8 In crowdfunding, patients in need of medical care have their profiles placed online for citizens around the world to assist with funding. This simultaneously finances care, increases the accountability and transparency of that care, and broadens awareness of diseases of poverty.
With these four key strategies—public sector partnerships, fail-forward innovation, implementation science, and social media-powered advocacy—Nyaya has articulated its own theory of global health care change:
- Identify the local delivery problem: Stay rooted in specific communities. Listen deeply. Talk with others. Engage in action-oriented reflection. Work closely with government from the outset.
- Develop pragmatic innovations: Commit to entrepreneurial action and “fail forward.” Develop and test new ideas. Develop strong management controls to evaluate and respond to outcomes. Have concrete benchmarks and targets. Be willing to let go of failed initiatives.
- Frame problem and innovation within a global context: Identify gaps in knowledge, implementation, and policy. Engage with other groups working on related issues. Inspire and connect through social media.
- Assess results via implementation science: Generate a list of core processes and outcomes. Apply both observational and experimental methodologies, including randomized controlled trials, depending upon the scientific questions at hand.
- Translate results into policy and social change: Lay a solid foundation of activists, politicians, practitioners, citizens, and scientists who can work together to realize the potential scale of innovations.
We now turn to two distinct programs—surgical care delivery and primary care clinic strengthening—to bring sharper relief to the vision and challenges of our approach.
Improving Surgical Access
Worldwide, over 11 percent of death and disability are attributable to surgically curable diseases. Every year, 234 million major surgeries are performed, but the distribution of these surgeries is highly inequitable.9-11 Approximately 30 percent of the world’s population receives 74 percent of the world’s surgical procedures, with the poorest third obtaining a meager 3 percent.10 Two billion people worldwide live in areas with less than one operating room per 100,000 people.12 As a result, patients in poor countries do not receive timely surgical services and suffer significant morbidity and mortality from preventable and treatable conditions.12,13 Though limited data exists, it is likely that the mortality and morbidity rates from surgical complications are higher among the global poor.14,15
From the beginning, access to surgical care has been one of the most challenging health care delivery problems facing Achham. Surgical care requires physical, human, and logistical resources that, at first glance, appear out of reach, with most surgical care delivered in cities between 16 and 36 hours away from the patient’s home. Given this remoteness, it has been clear from the outset that much of the surgical care would need to be delivered via non-local health care teams. There was also a major gap in the academic literature about how to implement an integrated surgical care delivery system in remote rural areas.
Surgical Access Systems
- The problem: There is an extreme lack of effective triage, treatment, and referral systems for surgical patients in rural areas.
- Pragmatic innovation: We are building an integrated surgical system that involves local surgical disease detection, partnerships with major referral hospitals, and “accompaniment officers” to help patients who live in remote areas.
- Global context: Surgery is a severely neglected aspect of global health delivery and innovations are needed for effective provision of and access to surgical procedures.
- Implementation science: We assess impact through a study involving all surgical patients across the three areas in which rural patients receive surgery: continuously available on site, available on site intermittently via visiting surgical teams, and referrals.
- Policy and social change: Through social media partners, like Watsi and Kangu, we offer a transparent and dynamic platform for generating awareness about the lack of surgical access in rural, impoverished areas. Through national partnerships, we are developing the influence to advance policy around surgical care delivery.
Nyaya developed two specific aims. The first aim was to describe the demographic characteristics and outcomes among surgical patients who receive care in rural district hospital settings. This was done in order to understand which patients might use our system. We separated surgical delivery into three categories: continuous, meaning almost always available at our hospital; camp-based, meaning available intermittently at our hospital; and referral services, meaning sent to a hospital other than our own. The second aim was to clearly describe the logistical and clinical processes needed to provide and coordinate care in a rural district hospital.16,17
Layered on top of these two key aims was a social media crowdfunding model in which patient profiles were placed online and small donors from around the world helped fund individual surgeries. With our first partner, Watsi, we have successfully funded 24 patients with $17,340 as of June, 2013. One unexpected result of our partnership with Watsi has been the local work to help patients surmount access challenges beyond simply cost of care. Challenges with childcare (women—as patients or caregivers—have several children at home, while the men are often working in India), family dynamics (women suffer from intense discrimination, illiteracy, and domestic violence), and transportation (travel to a referral center, plus housing costs there, may be upwards of several months’ income) are just some of the obstacles our patients have to overcome in order to receive necessary medical care.
Our work was displayed publicly to an online community. This may be one of the reasons why our team has been more responsive and accountable to this project than many other initiatives.
We have learned much in the first year of this partnership. Some patients have had their treatment delayed or denied due to family members’ unwillingness to accompany them for treatment. In other cases, contacting patients and patient families to inform them that their surgery has been scheduled has been quite challenging. The difficulty of traveling to and from surgical referral centers also hinders our ability to contact patients and transport them to operating rooms. We have worked to improve communication and follow-up using our existing network of community health workers, but there remains much room for improvement, especially in the remotest regions of Achham.
Once families are notified that their surgery has been funded, we then face complications with both accompaniment and understanding. Patients who suffer extreme poverty have difficulty leaving their land or work during the time required to travel to Kathmandu or other referral centers. Many patients and families have never left Far Western Nepal prior to surgery and get homesick, especially during long stays. Single mothers face difficulty accompanying their children to medical referral centers, as they often have multiple children to care for or need to stay at home as the primary breadwinner. Some patients also believe that surgery will not ultimately work, or that health care practitioners are not well intentioned. Community health workers and hospital staff have documented instances in which relatives remain vehemently opposed to surgical treatment despite the opportunity to give family members a chance at a longer life.
Nonetheless, our partnership with Watsi has greatly increased our ability to provide surgery to our patients, After a year of partnership, our clinical processes for getting patients screened, funded, and treated has become more efficient through trial and error. We describe many of the challenges and what we’ve learned in a forthcoming manuscript.18 (We have also blogged on these issues, including the topic of patients who died despite surgical care.19,20)
We have developed surgical services for local delivery parallel to our referral services. This has been a process fraught with challenges. Indeed, despite having adequate funding, human resource issues (particularly recruitment of leaders to manage complex surgical care delivery) delayed the start of local surgeries by more than two years. It was over a year after we had nearly completed the operating room renovations that we saw our first cesarean section. We did succeed in getting local staff trained as scrub nurse technicians and an anesthesia assistant via a partnership with Dhulikhel Hospital near Kathmandu. However, it took us over 18 months of recruiting to even get a general practice doctor trained in core surgeries. Additionally, as with our referred and Watsi patients, the distance between patient homes and Bayalpata Hospital (for on-site surgical care) makes post-operative follow-up difficult. Most patients walk several hours to reach us.
Strengthening Primary Care Clinics
Simple interventions exist to reduce mortality for children under five, but these are rare in impoverished communities. As a result, seven million children under the age of five die each year; 83 percent live in sub-Saharan Africa or South Asia, and two-thirds die of diseases with clear, cost-effective treatments.21 Safe delivery care, effective neonatal resuscitation, management of childhood diarrhea, malnutrition, and pneumonia, as well as a suite of other interventions to reduce child mortality each relies on a functional primary health care system.22-24 The millennium development goal of reducing global under-five mortality to 38 per 1,000 will not be reached by 2015, and to reach the new global target of 20 per 1,000 by 2035 will require better solutions.25 The focus of this intervention is on maternal and child health. While Nepal has made significant progress toward the millennium development goals, the largest challenge that the country faces in reducing under-five mortality is addressing mortality among newborns, which accounts for 54 percent of all deaths among under-five children. This is closely tied to the fact that nationwide only one in five births is monitored by a skilled birth attendant.26
There are three fundamental levels of the Nepali health care system: community health workers, primary care clinics, and district-level hospitals. Nyaya, over the last several years, has focused its efforts to improve public sector capacity among community health workers and district-level hospitals. We have thus far not engaged with primary care clinics, though they are critical. This is largely because of the challenges intrinsic in working with such a dispersed network plagued by minimal investment, infrastructure, and human resources. For example, a primary care clinic might be “only” two or three hours away from some villages. (A hospital might be an entire day’s travel.) Delivery data from women giving birth at Bayalpata Hospital show that women are willing to walk one hour to deliver at a primary care clinic, and about two hours to deliver at a hospital. Thus, the number of women delivering at the hospital dramatically drops for women who live beyond the two hour perimeter, as it also does for women who live beyond an hour of primary care clinics. One of the programmatic innovations being discussed in order to increase the institutional delivery rate at the hospital and the surrounding primary care clinics is to build hostels on or near safe birthing centers, including the primary care centers and Bayalpata Hospital. This will allow women to seek delivery care before they go into labor and are unable to walk great distances.
Strengthening Primary Care Clinics
The problem: Infrastructure, human resource capacity, and supply chain reliability tend to be very weak among public sector primary care clinics in rural Nepal. Yet these primary care clinics form the backbone of the health care system.
Pragmatic innovation: We are transforming existing public sector primary care clinics into hubs of electricity and telecommunications, linking them to community health workers, and deepening their ties to the hospital through material and human resource support. The effectiveness of primary care clinics will be continuously monitored through scorecards created by community health workers. These scorecards are posted online for transparency and crowd-source funding. The focus initially will be on maternal and neonatal health.
Global context: Governance and accountability of public sector primary care clinics remains a central bottleneck in improving the system of care and prevention.
Implementation Science: We are conducting a randomized controlled trial that monitors population health outcomes to test the effectiveness of this intervention. This provides a rigorous framework to determine if this intervention is effective for strengthening primary care services in remote regions.
Policy and Social Change: We are performing this work in conjunction with national and local governments. We are also leveraging social media to generate global support.
There is a dearth of experimental data on the relative effectiveness of strategies to strengthen health systems and improve intervention processes specific to primary clinics. Experimental studies of systems-level interventions are needed to address this knowledge gap. Unlike the surgical program described above, our primary care clinic intervention is amenable to a randomized controlled evaluation of comprehensive health system interventions that reduce child mortality. The study, which we will begin in late 2013 will first validate a monitoring system in which community health workers use mobile phones to collect data on patient illnesses. Workers then map and display the data publicly. We will also assess how the reliability of this data compares with independent audits. Subsequently, the study will conduct a randomized trial of an intervention using this mobile health application to reduce under-five mortality. Data tracking systems will help provide transparent data to the people of Achham.
Although this endeavor is only in the earliest stages of exploration and piloting, we have seen significant challenges, failures, and revisions to our initial plans. For example, we partnered with Medic Mobile, a mobile data collection enterprise, in order to collect real time data on the health indicators seen in the community. However, in the year that we partnered with them, we failed to collect truly real-time data or to use the data that was collected in a way that informs and improves programs. (The data was instead compiled weekly and often appeared underused instead of put toward improving health care delivery.) There were additional challenges in coding and data entry, although the community health workers ultimately entered data successfully. This was a major feat given the high levels of language, numerical, and computer illiteracy among our community health workers. Once again, the main bottleneck has been recruiting effective, talented, and experienced leaders who can stay for long periods in a remote environment. Kathmandu (and beyond) always beckons the most talented leaders. Yet, our community health leadership, for example, has never stayed for more than one year—one among many challenges stunting the growth of our primary care work.27
A New Global Health Care Enterprise
Idealists, motivated by social injustice, founded Nyaya Health. As the organization matured, this purely social justice approach—grounded in moral outrage—could not alone support our growth and effectiveness. We evolved by forging pragmatic partnerships, professionalizing the organization into a health care enterprise rather than a typical charity, developing rigorous impact metrics, and using new modes of social media to increase transparency. This evolution was driven largely by the realization that effective implementation—the central problem—requires a long-term, systematic approach. Our lessons will hopefully be of use to other health and social justice entrepreneurs as we continue to refine the global health delivery endeavor, translating a vision of justice into the action of effective care delivery.
