Venue: “Feature" (~2,500-4,000 words) for http://thesolutionsjournal.com.
Healthcare Innovation, Implementation Science, and Social Action: Nyaya Health in Nepal
by Duncan Maru, Jackie Pierson, and Caroline King
“It is a story that I will carry with me for the rest of my life, about how the perfect storm of poverty, female disempowerment, and HIV brought about the undignified, horrifying demise of one young woman.It is also one that I am ashamed to recall, since I without question made the last day of her life even more terrible. She was seated on the first floor of her clay house, about 8 feet above a pile of excrement and refuse.She was wasted, delirious, tachypneic, incontinent, eaten by flies, and, it seemed, on display for the whole village.She was being barely taken care of by her half-blind elderly father-in-law.It was hard to imagine a more undignified way to suffer and die.It epitomized the pestilence-as-punishment meme that has had so much traction throughout human society.”
-Duncan Maru, 2007, Achham, Nepal
Gross inequalities exist in access to effective healthcare—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, entering just at the end of a brutal civil war, there were no allopathic physicians for a population of approximately 500,000 people. The dearth of healthcare services was glaringly obvious in a place where 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.
Nyaya Health started working in Achham in 2006 owing to its severe isolation, lack of healthcare infrastructure, and growing HIV epidemic. When started out, basic primary health care had been essentially non-existent, with the government health clinics unstaffed and unsupplied. The dire problems of the region had been made more acute by a strong presence of Maoist insurgents who waged a decade long civil war. As a result, the health statistics in the area painted a picture of emergency proportions: over 60% of children were malnourished, a rate unparalleled anywhere in the world including sub-Saharan Africa; only 0.5% of deliveries took place in a hospital, and nearly 1 in 100 pregnancies resulted in the death of the mother; 80% of the population lacked access to safe water and sanitation, leaving more than 60% of people infected with intestinal worms; and tuberculosis (TB) prevalence was a staggering 316/100,000.[2] Since 2008, Nyaya Health has delivered care to over 123,000 patients, catalyzed $140,000 of investment from the Nepali government, and currently employs 160 Nepalis. The hub of operations is at a government-owned district-level hospital that Nyaya Health manages. From this hub, we oversee a cadre of approximately 100 female community health volunteers who work within the government’s existing network.
Nyaya Health’s approach to healthcare delivery in “last mile communities,” rooted in our experiences in Achham, is centered around the notion that the government plays a central role in providing security against unnecessary death and disability from preventable or treatable diseases. Diseases epidemic among the poor—pneumonia, malnutrition, emphysema, HIV, tuberculosis, maternal mortality—are not effectively addressed by the private sector since effective treatments are not lucrative and asymmetries of information extreme. This is true even as expensive and ineffective treatments (most egregiously, inappropriate antibiotics) are peddled rampantly by unregulated and under-trained private quack providers. As such, the public sector plays a critical role in delivering health as a human right. Even in the most remote and isolated communities, where poverty appears intractable, it is possible to create effective systems that offer these essential protections. These systems involve remote rural energy and water systems to combat inadequate infrastructure; strategies to retain staff in a harsh environment; maintenance protocols to avoid crises in places where technicians are not available; and extensive networks of lay health workers to identify and follow patients. “Innovation” in systems design is largely about identifying simple, feasible, and durable strategies to address these nitty-gritty challenges. At the same time, much remains unknown about how to implement and sustain these systems. As such, Nyaya pairs this grassroots systems innovation with rigorous studies of these innovations in order to understand what works best.
Additionally, Nyaya has been the first organization to successfully crowdfund rural referral care through a partnership with Watsi, a medical crowdfunding organization, and Kangu, which crowdfunds delivery care. In the next 3 years, Nyaya will build out its rural hospital hub to be the first teaching hospital in a region of over 2 million people, encircle the hospital with 38 existing (though poorly functioning) government clinics, and integrate its work in prevention, disease surveillance, and follow-up care by supporting over 400 women as community health workers. This will all be done within the government system and will be complemented by a division that rigorously evaluates program impacts through Harvard’s new Global Health Delivery Partnership. By 2016, Nyaya expects the Nepali government to be responsible for sharing 40% of the costs of the model (currently at 10%). Given our success to date, we have recently received a three-fold increase in government support after only four years of partnership.
Healthcare Innovation, Implementation Science, Social Action
"Seldom does any community-based action succeed on first trial. Instead, officials and experts need to learn how to “embrace error...When something does not happen according to workplans, the person who identifies the problem, perhaps by making a mistake, should be congratulated and rewarded, because then solutions can be tried to make implementation better. Learning from mistakes and correction through repeated trials is how people naturally learn, and it is what social groups do best. Iteration helps communities to find their own way through local experimentation and adaptation, to solutions that were inconceivable a few years previously."
-Carl Taylor, MD, global primary health care pioneer
Fundamental has been our embrace of failure as an intrinsic aspect of work on “intractable” problems of “entrenched” poverty. Failure is intrinsic to rural healthcare delivery and speaks to the importance of staying rooted in specific communities in order to develop systems-level solutions that emerge over time. More recently, we have deepened our relationship to failure by aligning our work with the technological and social entrepreneur communities and their emphasis on “fail forward”—the idea that one should approach a problem with the knowledge that testing new ideas demands that most of these ideas ultimately don’t work out. Furthermore, the only rigorous way to assess which interventions succeed or fail is through impact evaluation.
In impact evaluation, we attempt to wed the social entrepreneurial tradition of fail forward with the academic tradition of implementation science. While the prescriptions remain highly debated, it is clear that evidence-based interventions to improve the health of communities remain woefully under-implemented in settings of extreme poverty throughout the world [3, 4]. Implementation science—the systematic study of interventions aimed at delivering technologies and medicines in settings of under-utilization—has developed to rectify this problem in both well- and under-resourced healthcare settings [5].
One notable gap in implementation science is the discussion of its relationship to social action [5]. This discussion, however, is critical in settings of extreme poverty, where the social, historical and cultural roots of under-utilization or under-implementation are fundamentally tied to lack of access to economic resources [6]. It is impossible, for example, to ignore social action in implementation science research when studying the implementation of evidence-based interventions for child survival within the government sector in a marginalized and economically depressed area [7]. Our own implementation science work is deeply tied to social action, as we cannot ignore deeply entrenched poverty and social inequality in our plans. As such, just as the cultural or contextual factors affecting under-implementation should be discussed and strategies for scale should be described in well-conceived implementation science protocols, so too should implementation science studies include clear plans for achieving the social and political support for implementing the findings of the research. This, we feel, is a critical ethical mandate for implementation scientists, since the participants of the research will not benefit in the absence of a sound plan for post-study social action. From this background, Nyaya has articulated its own theory of global healthcare change`:
1) Identify the local delivery problem: Stay rooted in specific communities. Listen deeply. Talk with others. Engage in action-oriented reflection.
2) Develop pragmatic innovations: Commit to action and “fail forward.” Develop and test new ideas. Have concrete benchmarks and targets. Be willing to let go of failed initiatives. Run with what seems to work.
3) Frame problem and innovation within a global context: Identify gaps in knowledge, implementation, and policy. Engage in dialogue with other groups working on related issues. Inspire and connect through social media.
4) Assess results via implementation science: Generate a list of core volumes, processes, and outcomes. Apply both observational and experimental methodologies, including randomized controlled trials, depending upon the scientific questions at hand.
5) Translate results into policy and social change: Lay a solid foundation of a network of people, activists, politicians, practitioners, citizens, and scientists who can work together to realize the potential scale of innovations.
Two recent initiatives, describe below, illustrate this theory of change applied in practice.
Nyaya’s Approach to Surgical Referral Systems
Worldwide, over 11% of death and disability are attributable to surgically curable diseases. Every year, 234 million major surgeries are performed [8-10], yet the distribution of these surgeries is highly inequitable. Approximately 30% of the world’s population receives 74% of the world’s surgical procedures, with the poorest third obtaining a meager 3% [9]. Two billion people worldwide, roughly a third of the global population, live in areas with less than one operating room per 100,000 people [11]. As a result, patients in poor countries do not receive timely surgical services and suffer significant morbidity and mortality from preventable and treatable conditions [11, 12]. Though limited data exist, it is likely that the mortality and morbidity rates from surgical complications are higher among the global poor because these rates are often underestimated due to poor follow-up [13, 14].
From the beginning, access to surgical care has been one of the most challenging healthcare delivery problems facing Achham. Surgical care requires physical, human, and logistical resources that, at first glance, seemed out of reach, with most surgical care being delivered in cities over 15 hours away at a minimum, and up to 36 hours away. At the same time, surgeries are some of the more compelling individual interventions to fund, since they have such direct, tangible impact. When we connected with the social enterprise Watsi, we worked together to identify an opportunity to fund surgery as well as transform surgical availability in Nepal. Indeed, their partnership, by helping to hold our own team accountable, has catalyzed our ability to deliver surgical care more effectively.
The surgical protocol contained two specific aims for documenting the surgical scale-up process across on-site and referral levels of care. The first aim was to describe the demographic characteristics and outcomes among surgical patients who receive care in a rural district hospital setting. This was done in order to understand which patients might use our system, and how they interact within our framework. We broke patients into three categories of surgical delivery: 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 specific aim was to clearly describe the logistical and clinical processes needed to provide and coordinate care in a rural district hospital setting. This aim will include data from each branch for eventual publication. As implementation scientists, we aim to act on ideas, research our impact, and disseminate our work. Thus, publishing our own successes and failures as related to our surgical program can help push surgical development at other rural, impoverished sites forward more quickly than duplicating mistakes we have learned from in Achham.
Layered on top of this is a crowd-funding social media model in which patient profiles are placed online and small donors from around the world help fund individual surgeries. With our first partner, Watsi, we have successfully funded a total of 24 patients with $30,539; the time from funding request to receipt averaged 5 days (3 days if you exclude two outliers).
One unexpected and compelling result of the program is that it has galvanized the local team around accompanying patients. The notion of accompaniment is that all patients, especially those living in extreme poverty, require significant assistance in accessing medical and surgical care even if the care itself is paid for. Challenges with childcare (women either as patients or as caregivers have several children at home and the men are often working in India), family dynamics (women suffer from intense discrimination, illiteracy, and domestic violence), and transportation (travel and housing costs to a referral center 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. With each patient we see, we encounter different obstacles for which we ultimately seek solutions. For example, we have partnerships with several organizations that can provide free or reduced travel or free or reduced lodging for our patients, even when funded by Watsi. Additionally, our on-site team often develops and implements seemingly simple solutions that can reduce costs, such as sending multiple Watsi patients in the same car out of Achham.
We have learned much in the first nine months of this work. Some patients have had their treatment delayed or denied altogether 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 posed a significant logistic challenge to our planning process. The difficulty of traveling to and from surgical referral centers also hinders our ability to not only contact patients, but to transport to operating theatres in a timely fashion. We have worked to improve communication and follow up using our existing network of community health workers, although challenges still exist, especially in the most remote regions of Achham.