Who Are Informal Providers and Who Is Seeking Their Care?

In light of an inconsistent definition of IPs, Sudhinaraset and colleagues (2013) developed a helpful working definition, of which the committee selected three components:

Caregivers lacking formal training with a defined curriculum who also meet at least two of the following three criteria:

• receive payments (usually undocumented) from patients rather than institutions;
• operate outside the purview of regulations, registration, or any official oversight; and
• may be part of professional associations that do not have certification or regulatory authority.

Using this definition, Sudhinaraset and colleagues (2013) found that IPs had very high patient loads and sometimes represented more than half of all providers in Asia and Africa. They also found that the health sector globally has a significant number of IPs who operate in a variety of health areas. They may include community health workers (CHWs), allopathic providers, traditional healers, faith healers, homeopaths (Ahmed et al., 2009), or often people who are trained in one area but practicing in another—for example, trained pharmacists acting informally as doctors in their neighborhoods. The committee agrees with this working definition but would remove the part regarding training, as that becomes very difficult to define and categorize with CHWs. Instead, the committee highlights the importance of these IPs operating beyond the purview of regulatory oversight, being unlicensed, or providing a service beyond the scope of their license.

While IPs can fall into several categories, a study in Bangladesh, India, and Nigeria found that the majority are fairly well educated, having completed levels of secondary school and even beyond (Center for Health Market Innovations, 2010). While most lack formal medical training, most have some type of training, such as courses offered commercially, public training for CHWs, or some type of apprenticeship. Cases do exist of fraudulent IPs who are trying to deceive patients and who are driven more by a profit motive than by any strong desire to offer care of high quality (Bloom et al., 2011; Cross and MacGregor, 2010). But several studies demonstrate that the motivations of many IPs go well beyond only making money and include, for example, pursuit of social standing, knowledge acquisition, and community solidarity (Sieverding and Beyeler, 2016). For instance, volunteer CHWs in South Asia and sub-Saharan Africa have espoused social recognition and personal empowerment as reasons for becoming an IP, not linked directly to financial gain (Glenton et al., 2010; Gopalan et al., 2012; Kasteng et al., 2016). Likewise, medicine vendors in northwest Cameroon see themselves as gatekeepers for access to strong medications and take that responsibility seriously (Hughes et al., 2013).

Many people use IPs because they are available, while formally trained nurses and physicians are in very short supply. For example, the ratio of traditional healers to population in Africa is 1:500, while the ratio of medical doctors to population is 1:40,000 (Abdullahi, 2011). This imbalance is more pronounced in rural than in urban areas; urban populations in African countries typically have greater access to formal providers. Yet, even urban residents sometimes use traditional medicine more often than they use formally trained caregivers (Bamidele et al., 2009). Even in countries with easy access to well-established formal care, such as Singapore and South Korea, people commonly still use traditional medicine because of cultural or historical influences (WPRO, 2012). In India, most people seek care in the private sector, where providers' qualifications vary from a medical degree to one based on traditional medicine (e.g., Ayurveda) to no training at all. Most visits, however, may tend to be to underqualified providers, as indicated by a study on health-seeking behavior in rural India. That study found that 70 of every 100 visits to a health care provider were to unqualified private providers, whereas 8 of every 100 visits were to qualified public providers (MAQARI Team, 2011).

How Good Is the Care in the Informal Sector?

Health care providers of any kind—whether providing care, advising on treatment options, or dispensing medications—should ideally be trusted professionals. But the large numbers and diverse nature of IPs, who typically operate outside of regulatory oversight, raise legitimate concerns about the quality of care they provide. The default assumption tends to be that because IPs lack standard qualifications, they deliver services of substantially lower quality relative to formally trained medical doctors, nurses, and pharmacists. But actual data on that comparison are scarce, and findings are mixed. The relevant evidence is difficult to parse, in part because IPs are such a highly variable group. Some IPs, for example, act as apprentices to formal doctors for several years, while others have almost no involvement in the formal health care sector before setting up shop.

Because a large proportion of people in India seeks care from IPs, that nation has yielded some of the best data on the topic. Gautham and colleagues (2014) studied IPs in two different settings in India and found that more than two-thirds were able to manage common conditions competently, although they did prescribe more drugs than necessary. Das and colleagues (2012) used a gold standard method—standardized patients (that is, people recruited and trained to simulate symptoms and complaints)—to assess quality of care in rural and urban India across a large number of studies, and found only modest differences between trained and untrained practitioners in their adherence to approved checklists. They also found no differences in the likelihood of providing an accurate diagnosis or correct treatment (Das et al., 2012). A study in Nigeria found that medicine vendors—a common type of IP—knew about the government malaria policy, with nearly 60 percent indicating correctly that artemisinin-based combination therapy (ACT) was the first-line treatment. More than three-quarters of those studied took adequate patient histories, and nearly half prescribed ACT properly (Center for Health Market Innovations, 2010).

While the evidence suggests that IPs are only modestly less knowledgeable than formal providers, factors other than the store of knowledge also drive the quality of care. It is known, for instance, that a very large know-do gap exists in health care delivery throughout the world (see Chapter 2). That is, providers—whether formal or informal—often fail to act on knowledge that they appear to have. In low-resource settings, there can be a substantial difference between what providers appear to know in standardized testing (such as clinical vignette testing) and what they do when caring for an actual patient (see also Chapter 4) (Mohanan et al., 2015). A study conducted in Delhi, India, compared the performance of formal providers on vignettes with their performance when a standardized patient presented with the same symptoms. The researchers found that for standardized patients, the doctors were less likely to recommend appropriate tests and to make referrals than they were in the vignette-based testing (10 percent versus 73 percent) (Das et al., 2015). These results highlight that a lack of knowledge among providers is not necessarily the limiting factor for high-quality care in low-resource settings. Instead, providers often have knowledge that they do not translate into practice. Much more research is needed on how to help providers—both informal and formal—strengthen the connection between knowledge and practice.

Just as a knowledge base is insufficient to ensure high-quality care, the same is true for structural inputs alone. Studies find only very weak links between the structural inputs to health care facilities, such as medical equipment and patient loads, and the quality of care. This is the case in both rural and urban environments. Researchers argue that quality gaps cannot be closed by simply conducting more training or adding more doctors. Instead, as discussed in Chapter 2, quality improvement on all fronts will require systemic changes and proper designs to make a holistic impact on health care quality. Examples of such systemic changes include increasing accountability through community monitoring (Björkman and Svensson, 2009), finding ways to attract clinicians who are intrinsically motivated, and motivating current employees—whether in the formal or informal sector—through encouragement and scrutiny from peers (Brock et al., 2012). Since IPs operate outside of regulatory authority, the level of quality of the care they deliver is largely unknown. Countries need a national strategy for identifying these IPs and for measuring their work processes and outcomes.

What Are the Benefits and Risks of Care Received from Informal Providers?

While many organizations, especially those representing formal providers, are skeptical of IPs, the reality is that IPs represent a significant portion of providers and that efforts to eliminate them—or to ignore them—have not been successful. Whatever a nation's strategy toward IPs may be, understanding both the benefits and risks of their care is critical to making wise decisions. In countries without robust health care coverage, patients are often limited to seeing providers whose fees they can afford. Because IPs are relatively inexpensive, they are often the providers of choice for ailments that are not life-threatening. A study in Bangladesh, for example, found that the median cost of treatment by a formal physician was 5 times higher than that of a village doctor and 15 times higher than that of a traditional healer (ICDDR, B, 2009). IPs also typically have more forgiving payment policies, such as sliding scales or deferred payment options (Sudhinaraset et al., 2013).

Beyond affordability, another benefit to using IPs is that they are in some ways more accountable and more familiar. Many people choose to use IPs even when there is, at least theoretically, a public clinic nearby that provides free services. The reasons for this are complex but include the high rates of absenteeism in public clinics and the greater degree of familiarity with private IPs, since they often have strong local roots in their own communities. Although IPs may not be formally regulated, some argue that it is easier to keep them “in check” relative to formal providers since their practice depends on maintaining good relationships with their community. Their accountability is, in this sense, direct. Conversely, formal providers working in public clinics are often from outside the local community and are posted in those clinics for short periods of time. A study in India found that more than half of the IPs surveyed were born in the same block or district where they practiced, rendering them well-known and often trusted members of the community (Center for Health Market Innovations, 2010). Typically, they are cognizant of or aligned with the values and beliefs of the people in their community. They may also be more flexible than the formal care system in the services they provide. As researchers found in Uganda, for example, they may be more willing to make home visits, especially with respect to women's reproductive care (Kiapi-iwa and Hart, 2004). While this issue may become less important in the future if formal health care systems shift to become more community-based, for now, getting to a formal clinic or hospital in many places is enough of a barrier to lead patients and families to choose IPs instead. There also is typically less turnover among IPs than in formal facilities, increasing their familiarity to their community.

One example illustrating the benefits is an integral part of India's National Rural Health Mission. The goal is to provide every village in the country with an an accredited social health activist (ASHA), who acts as a trained CHW serving as a link between the community and the public health system. While their formal medical training is limited, ASHAs act as a primary source of education on health practices and aim to increase the utilization of health services (National Health Mision, n.d.). The ASHA program was launched in 2005, and its work was key in reducing the infant mortality rate from more than 50 to 34 deaths per 1,000 live births by 2016 (IANS, 2017).

Of course, care from IPs carries substantial risk. Some examples associated with traditional and complementary medicine include use of poor-quality or counterfeit products and treatment by unqualified practitioners who can miss or delay diagnoses, with dire clinical consequences. IPs can be sources of misleading information or be directly responsible for adverse medical events, such as side effects or harmful treatment interactions (WHO, 2013). A review in Bangladesh in 2009, for example, found that just 14 percent of the drugs used by IPs to treat diarrhea, pneumonia, fever, and colds were appropriate (in line with treatment guidelines) (Bhuiya, 2009). Authors of the studies described above in Bangladesh, India, and Nigeria also caution that IPs have been shown to engage in detrimental, unnecessary, and wasteful medical practices, such as conducting insufficient testing prior to diagnosis, performing unnecessary injections, and overprescribing (Center for Health Market Innovations, 2010). Of course, these problems are also found among formal providers, sometimes at nearly comparable rates.

What Can Be Done to Improve Care in the Informal Sector?

What can nations do to improve care in the informal sector? The dearth of formal research on the patterns, behaviors, and outcomes of that sector limits strong conclusions, but research does support some sensible steps. While the many different contexts and types of IPs make generalized recommendations difficult, one critical issue across the board is addressing the gap between IPs' knowledge and practice. It is also important to understand where in the scope of practice IPs can contribute positively to a health system. In the end, of course, each country needs to have a contextual understanding of how its IPs fit within and serve the country's cultures and populations. Research suggests several plausible steps toward improvement, some of which are described below: acknowledging IPs, leveraging traditional healers, defining scopes of practice, and implementing various types of interventions.

Implementing Interventions

The most common recommendations for improving informal care found in the systematic review of Sudhinaraset and colleagues (2013) are for educational interventions, such as capacity-building training, patient education programs, and continuing education requirements. While these interventions would be directed at IPs, there is also a need to educate formal providers in traditional or complementary medicine to augment their understanding. Numerous universities in the Economic Community of West African States have already recognized this need and included transcendental meditation in their medical and pharmaceutical curriculum (AFRO, 2011). A large number of studies also call for oversight and regulation of IPs, as well quality assurance by way of professional associations. Process interventions were frequently recommended as well, including such activities as promoting dialogue and developing working relationships among formal and informal providers (Sudhinaraset et al., 2013).

In a separate review, Shah and colleagues (2011) present a conceptual framework for considering the types of interventions that could be implemented in the informal system (see Figure 5-1). Successful interventions for child health involve changing the environment of incentives and accountability, focusing on the higher levels of the health system illustrated in the committee's framework in Figure 2-2 in Chapter 2. In Uganda, for example, common goals and expectations for diagnosis and treatment of child illness were developed through negotiation sessions with private providers, leading to significant improvements in the majority of items measured (Tawfik et al., 2006).

FIGURE 5-1

Interventions to improve health services in the informal sector. SOURCE: Shah, N. M., W. R. Brieger, and D. H. Peters. 2011. Figure in “Can interventions improve health services from informal private providers in low and middle-income countries? (more...)

It should be noted that very few studies have called for increased access to formal providers to reduce the need for IPs, partly because such efforts are unlikely to be successful. Sudhinaraset and colleagues (2013) recommend that interventions not be reliant on individual-level behavior changes alone as they are extremely difficult to influence; rather, a combination of market-based and regulatory approaches with rigorous evaluations may prove to be successful for improving the quality of informal care. They identify quality improvement strategies that combine providing training with improving market conditions, such as provider incentives and accountability, as being most successful (Shah et al., 2011).

Supporting this finding, a 2010 review identified training as one of the most common interventions, but ineffective on its own. Training was most successful when paired with initiatives that changed institutional relationships and incentives (Shah et al., 2011). More specifically, studies employing training alone found positive outcomes just 21 percent of the time, but when training was combined with other strategies, the rate of positive outcomes was nearly 60 percent (Shah et al., 2011). While this finding does not negate the importance of training providers at the community level, more successful approaches included measurement and disclosure of performance. In a large randomized controlled trial, Das and colleagues (2016) found that a 12-week intervention that entailed training IPs substantially improved case management rates—the IPs were more likely to make the correct diagnoses and offer proper treatments. Yet, while these results are promising, the intervention unfortunately had no impact on rates of unnecessary prescribing. Truly understanding the effectiveness of training will require more rigorous research designs to document longer-term outcomes and better incorporate contextual factors (Shah et al., 2011). High-quality intervention research targeting IPs and measuring population-level outcomes is a major need.

What Is Left to Understand?

Much more is unknown than known regarding IPs, even though a very large proportion of the world's population seeks them out frequently to meet health care needs. At a foundational level, common definitions of IPs and a common understanding of what types of providers exist and what services they provide are needed. The systematic review of Sudhinaraset and colleagues (2013) calls for a better understanding of patient choices and knowledge. And crucially, research is needed to examine the quality of IPs, beyond just their knowledge base, since knowledge alone has been proven to be a poor indicator of clinical quality.

In addition, studies are needed to understand traditional medicine in greater depth to help countries develop their frameworks and strategies, especially since many countries continue to incorporate traditional healers and practitioners into their formal health care systems. This trend transcends income level; as noted earlier, many high-income countries also see growing use of alternative medicine and complementary therapies. In Australia, for example, visits to complementary health professionals increased more than 50 percent from 1995 to 2005 (Australian Bureau of Statistics, 2008). Likewise, the use of acupuncture, a traditional Chinese medicinal practice, is now recognized by 103 member states within WHO (WHO, 2013). With so many modalities from different regions being used worldwide, the assurance of quality in traditional medicine can benefit from heightened levels of cooperation among countries to define and support access to safe products and practices from this sector (WHO, 2013).

As of 2012, 73 WHO member states had established national research institutes for traditional and herbal medicine, and 119 were regulating herbal medicines. Yet, 105 member states cited “lack of research data” as a top difficulty with respect to regulatory issues related to the practices of traditional medicine, and 68 cited a lack of financial support for research on traditional medicine as a challenge (WHO, 2013). Clearly, this represents an opportunity for the global community to bring together centuries of varied experience and research and regulatory experts to improve the quality of traditional medicine.

Growing Challenges in the Number and Distribution of This Population

The number of people worldwide who are currently living in some type of extreme adversity, whether for humanitarian, war, refugee, or fragile state reasons, has continued to grow in recent years as a result of ongoing sociopolitical conflicts. As this number and the number of countries involved grow, it becomes increasingly difficult for the limited scale of global resources and initiatives to address the problems adequately. Before issuing specific calls for action, however, it is imperative to understand more about these various situations, how many people are subject to what types of environment, and what their true needs are so that those in the global community can prioritize what is most needed and mobilize appropriately for action.

According to the World Bank (2018a), half of the world's poor—2 billion people—live in fragile or conflict-affected states, and more than 50 percent of all refugees in 2014 were children for whom access to education, health care, and other essential services was severely limited. Globally in 2015, the world saw a record high number of people—more than 65 million—who endured forced displacement because of conflict or persecution (UNHCR, 2016). Data from the Organisation for Economic Co-operation and Development (OECD) paint an even bleaker picture, indicating that half of the 836 million people living in poverty today globally are living in fragile contexts—a proportion projected to reach 80 percent by 2030 (OECD, 2018a). Thus, traditional avenues of development and bilateral aid and historical global health efforts are unlikely to reach the vast majority of this population.

Service Readiness and System Inputs to Health Care

Chapter 2 describes some of the basic inputs or foundations for any health care system. In most high-income settings, these foundations can be fairly assumed to be present and functional. In many low-resource settings, however, the foundations of the health care system can be variable throughout a country. In settings of extreme adversity, the quality of the inputs to the system and general service readiness is even lower, and may vary widely on a daily basis depending on the status of the power grid, existential threats (such as bombs), and the available workforce. Although it has been noted throughout this report that these types of foundations do not necessarily dictate the quality of care being provided in a particular location, their absence can certainly be expected to have a profound impact on the care that can be provided.

Although an increase in the workforce or training alone is inadequate to meet the demand for quality health care in typical low-income settings, the environmental issues that come with the lack of infrastructure and medical supplies in settings of extreme adversity compound the gaps in quality. A systematic review on surgical capacity in 21 low- and middle-income countries (LMICs), for example, revealed that less than two-thirds of hospitals regularly offering surgical care had access to a continuous electricity source or generator (Chawla et al., 2018), a point illustrated vividly during the committee's site visits to hospitals in Goma, Democratic Republic of the Congo (DRC). Lead doctors at hospitals in Goma highlighted the unstable power grid and the lack of working generators as critical causes of mortality and morbidity among their patients, especially in such settings as the neonatal ward, with babies in incubators.¹

Quantifying the Burden of Poor-Quality Care in Adverse Environments

Looking at countries facing extreme adversity as a subset of LMICs, one finds a disproportionate burden of low-quality care for certain conditions. The team that conducted the analyses for quality dimensions in Chapter 4 also performed analyses on a subset of countries that are classified as fragile states to gain a better understanding of the quality of health care delivered in these adverse contexts, although the lack of available data limits these findings in ways similar to those discussed in Chapter 4, and these numbers thus represent the committee's best estimates. In the case of quality-related neonatal mortality (unnecessary mortality among those with access to care), for example, an estimated 22.7 percent of deaths occur in fragile states annually, even though these states represent only 8.5 percent of the LMIC population (see Table 5-1). For other measures, such as lung cancer mortality, this proportion is much smaller (0.4 percent). This differential may be due to underreporting of cancers in fragile states, shorter life expectancies, or other factors. In addition, the definition used to identify fragile states is conservative and is at the national level—all countries with an FSI of 100 or above.²

TABLE 5-1

Quality-Related Deaths in Fragile States and Low- and Middle-Income Countries (LMICs) Annually.

With regard to person-centeredness, it appears that people in the fragile states for which data are available are more dissatisfied with their care on average relative to people in all LMICs, at 29.7 percent and 24.9 percent, respectively (see Figure 5-3). With the exception of Sudan, people in fragile states also report higher rates of disrespect than the LMIC average, 59 percent versus 57.6 percent (see Figure 5-4).

FIGURE 5-3

Poor overall patient experience in fragile states compared with all low- and middle-income countries (LMICs). SOURCE: See Appendix D.

FIGURE 5-4

Experience of disrespect in fragile states compared with all low- and middle-income countries (LMICs). SOURCE: See Appendix D.

While differences should be interpreted cautiously, lack of consumer choice (and the corresponding assumption that people in contexts of adversity may rate their care artificially high) is cited as a reason not to focus on or collect data on person-centeredness in these contexts. Yet, these data suggest that people faced with extreme adversity may retain the ability to pass judgment on the quality of care they receive. These data may also represent an underestimate of dissatisfaction and rates of disrespect.

Needs and Priorities in Adverse Environments

Although health care providers, including both humanitarian and local workers, try to “do no harm” and provide the best care possible given their situations and resources, caregivers in these settings of extreme adversity are likely have priorities that differ from those in more stable settings. Simply providing access to lifesaving care has historically been the priority, but as the numbers of people in extreme adverse circumstances worldwide rise and as the crises responsible for these circumstances shift to protracted status rather than being just acute emergencies, the need for health care services across the continuum from preventive to palliative care is increasingly being acknowledged.

Given the amount of violence and trauma to which both adults and children bear witness, mental and emotional health care is a top priority for populations in these settings. After several years of war, nearly half of Syrian children now show signs of posttraumatic stress disorder (PTSD), and one-quarter of them face developmental challenges (Karasapan, 2016). Researchers examining health-seeking behavior in Mosul in the period immediately following ISIS (Islamic State in Iraq and Syria) occupation found that emotional and mental health problems were leading illnesses for both adults and children (Marquez, 2016). Likewise, the Rohingya refugee situation in Bangladesh has escalated in the past 12 months, with nearly 1 million refugees crossing into Bangladesh from Myanmar as of February 2018 (WHO, 2018b). Not surprisingly, large numbers of these refugees have suffered serious mental and psychosocial impacts from their displacement, as well as from violent and traumatic experiences during their journey. Humanitarian responders recognize, as with refugees from Syria, the need for increased accessibility of specialized mental health services and greater capacity for these services within the primary care workforce. But given the breadth and depth of the problem, services must go beyond meeting basic needs and leverage community-based health care systems (Marquez, 2016).

Lafta and colleagues (in press) identify as other challenges in Mosul the shortage of medications and equipment, especially pediatric medicines and medicines to treat chronic conditions; the lack of health care professionals and the collapse of their salaries (likely related); and the weak coordination among providers in shelters, with limited access to follow-up on patients referred for hospitalization (Marquez, 2016). Other conditions affecting large numbers of patients in Mosul included diarrhea, hypertension, and noncommunicable diseases (NCDs). These problems were also identified as priorities by providers in Venezuela, with National Public Radio (NPR) reporting that the entire Venezuelan health care system is on the verge of collapse (Raphelson, 2018). The Pharmaceutical Federation of Venezuela estimates that the country has a shortage of 85 percent of medicines (Reuters Staff, 2017), while some hospitals lack electricity, and more than 13,000 doctors have left the country in the past few years because of the deteriorating circumstances (Trejos, 2017). These numbers were reflected in a front page tragedy early in 2018 when a Major League U.S. baseball player died in his native Venezuela because antibiotics to treat his pneumonia were difficult to find (Raphelson, 2018).

While initial priorities upon settling the Rohingya refugees in Bangladesh are clean water and sanitation to prevent disease, nutrition is also critical. More than 400,000 of those in the refugee and host community populations require emergency nutrition interventions (WHO, 2018b). Responders worry that without immediate scale-up of interventions, nearly 150,000 children under 5 will suffer from acute malnutrition. Unfortunately, nutrition needs to be a priority in these settings beyond the aftermath of a crisis. A recent observational study in Afghanistan found the prevalence of undernutrition to be among the highest in the world, with child wasting exceeding 20 percent in high-conflict regions (Akseer et al., 2018). Stunting was extremely variable, with prevalence ranging from 4 percent to 84 percent depending on the district.

Variability and Challenges of Providing Care

While the health issues described above are the more immediate and acute ones that emerge in crisis settings, rightfully demanding attention and resources from donors and health care providers, other chronic and persistent conditions also exist. The lack of adequate knowledge or infrastructure for addressing these more chronic conditions creates gaps in already fragmented and underresourced systems. More than 80 percent of the 629,000 Syrian refugees in Jordan, for example, are settled not in camps but in communities within the country, reflecting a broader trend globally (UNHCR, 2015). As might be expected from the growing burden of NCDs worldwide, a growing percentage of displaced older populations from middle-income countries require care for their chronic conditions. This changing profile demands a different set of services than humanitarian and other responders are typically familiar with providing, and it places a heavy strain on the host country's health care system (Akseer et al., 2018). In the particular case of Syrians, the population had high rates of smoking, high body mass indexes, and elevated blood sugar before the conflict began in 2010, yet very little attention had been given to NCD prevention and health promotion (Doocy et al., 2016). Thus, with the population now spread out across various settlement locations, addressing NCDs systematically has become extremely challenging. Several experts identify a shortage of guidance on NCDs in various emergency guidelines and policies, leading to a gap in adequate health care for populations during and following emergencies (Demaio et al., 2013).

Another health care issue that has advocates but often lacks supporting data is reproductive health care and gender-based violence in contexts of conflict, humanitarian crisis, or failed states. Sexual violence is common in these settings of extreme adversity, and it is exacerbated by separation from traditional communities and a breakdown in law and order. At the 2016 World Humanitarian Summit, WHO called attention to sexual and reproductive health needs, particularly among women and girls. Of the 100 million who were targeted in 2015 with humanitarian aid, WHO estimates that 26 million, or more than one-fourth, were women and girls of reproductive age (WHO, 2018c). The disintegration of society in these settings often increases women's exposure to threats including sexual violence, unwanted pregnancy, unsafe abortion, increased rates of HIV and other sexually transmitted infections, and maternal illness or death. Thus, despite much attention in the global discourse to adolescent girls and young women, in these types of emergency contexts they are at high risk for sexual violence, as well as for human trafficking and forced marriage, and the services to help them are weak. And these issues often persist even after a conflict ends, as social norms can reinforce gender-based violence. Liberia, for example, continues to have some of the highest levels of sexual violence and abuse toward women worldwide even though its conflict ended more than 10 years ago (Samuels et al., 2017).

Reproductive health care in humanitarian settings was not seen as a priority until the mid-1990s, when donors, governments, and NGOs came together to urge increased advocacy and research and provided manuals and guidance on interventions in the field (Barot, 2017). Yet, while these efforts provided much support and encouragement, repeated evaluations, even as recently as 2014, highlighted key remaining gaps in service delivery, such as failure to immediately implement provision of the minimum initial services necessary at the onset of an emergency (IAWG, 2015). Some barriers to addressing these gaps are cultural, but many also involve a lack of relevant research and financial resources (Barot, 2017). One approach that could help fill these gaps would be to include women and girls in the planning and management of policies and programs for these types of emergencies, in accordance with the fundamental principles of person-centered design discussed in Chapter 2. This approach could be valuable not only after a crisis but also during peacetime to allow for the building of preparedness and resilience before an emergency occurs.

In addition to the challenges of the variability of illnesses and conditions in adverse settings, the vast number of health care providers and actors involved in a conflict zone or refugee camp results in an even more complex problem—coordination (see Box 5-1). For example, long-term progress in providing quality health care for all Afghan citizens will require a “combination of specific goal-oriented projects, foreign aid, domestic responsibility, and time” (WHO, 2018a). Given its history of conflict, damaged infrastructure, and dearth of providers, Afghanistan will need to utilize diverse resources to rebuild its health sector (WHO, 2018a).

BOX 5-1

Case Study: Palestinian Refugees in the West Bank.

Evidence Available to Guide Health Care Leaders

Both country-specific information and a general understanding of the evidence base are needed to address quality issues in contexts of extreme adversity systematically. An evidence base is lacking even for a country such as Iraq, which has a long-standing history of multiple conflicts and fragility; identification of poor-quality areas and methods with which to address deficiencies are still sorely needed (Al Hilfi et al., 2013). Some evidence is available that can be applied to similar settings to improve health outcomes. For example, health care quality fared the best in Afghanistan when both patient and provider were female (Hansen et al., 2008), likely because of the many cultural and religious challenges that surround interactions between men and women who are unmarried. Thus, just encouraging and incentivizing more female providers to increase the number practicing could improve the quality of care. Another nonhealth intervention found to be successful, also in Afghanistan, was the emergence of community councils that managed the oversight of health facilities. Likely because of their reputations in the community and the consequent accountability, their activity was a predictor of higher-quality care (Edward et al., 2012).

Some interventions, such as supervision and feedback, are found more traditionally within health care systems. In the same Afghanistan study, better supervision in the form of increased supervisory visits was associated with improvements in quality (Edward et al., 2012). Other studies have also shown supportive supervision to be a key motivating factor for provider performance (Naimoli et al., 2006). Another systemic intervention with successful outcomes in multiple postconflict settings is integrating mental health services into more routine care delivery or primary care systems, discussed below.

Care in the Informal Sector

Vast numbers of people receive care from IPs worldwide, with utilization rates in some countries exceeding 75 percent. Much is still unknown about the precise numbers of IPs and about who is using them, but the research that is available makes clear that the quality of their care is poor, although often no worse than that of the formal sector. This is a health care challenge, but one that also represents an opportunity. Researchers have identified promising interventions for addressing the quality concerns within the informal health care sector while also relieving pressure on the formal system. These include

• working with drug vendors, one of the most common types of IP, to bring them into the mainstream system so they can provide appropriate drug dosages and referrals to reach poorer populations;
• using institutional training, registration, and licensing to make traditional medicine practitioners more accountable and reduce the cost of care in the formal system;
• including IPs in counting of providers so more knowledge can be generated about their practices and patients;
• training traditional healers to improve their knowledge and patient management and referral practices for sexually transmitted diseases and HIV;
• defining scopes of practice for various types of IPs where possible and appropriate; and
• increasing opportunities for research to inform the regulation of traditional medicine.

Conclusion: Governments and leaders in the formal health care system need to acknowledge that informal providers in all countries deliver a significant proportion of health services. Bringing these providers closer to mainstream care delivery to the extent possible so they can be monitored, measured, and improved can help improve the quality of their care for large numbers of people.

Recommendation 5-1: Incorporate the Informal Care Sector in the Pursuit of Improved Care Delivery

Country governments should integrate informal care providers into their national health strategies and quality monitoring and improvement efforts. To this end, they should acknowledge that these informal providers exist and undertake efforts to assess and improve the care they provide, such as through education, training, and incentives, to the full extent possible.

Health Care in Settings of Extreme Adversity

About 2 billion people live in fragile states and conflict settings worldwide. Their access to high-quality care is unreliable at best, often nonexistent. Research on health care in these contexts is scarce, leaving health care leaders and providers with an unclear picture of what interventions lead to best outcomes and what to prioritize with limited funds. Although not robust and generalizable enough to apply in every case, evidence has emerged that offers lessons to guide leaders in improving quality in these contexts, as described in this chapter. In summary, those lessons include

• improved quality in Afghanistan when both patient and provider were female, and through the use of community councils that managed oversight of health care facilities;
• the benefit of increased supportive, supervisory visits in Afghanistan and Morocco;
• the potential to integrate mental health services into routine care delivery or primary care systems, especially with entry points in the community; and
• increased likelihood of receiving medical tests and information on health topics as a result of providing refugees in Palestine handbooks with which to track their care.

Conclusion: Assuring health care quality in chaotic, unstable, or unsafe settings where government is often weak or inconsistent in its role of delivering and overseeing public services has long been wrongly deemed a luxury. Indeed, the opposite is true. Given the extreme vulnerability of the people in these settings, providing them with high-quality care is arguably more important than is the case anywhere else. There is an urgent need to understand what interventions work to improve care under conditions of extreme adversity so they can be implemented as soon as possible to reduce mortality, harm, human suffering, and the waste of already insufficient resources.

Recommendation 5-2: Make Settings of Extreme Adversity a High Priority

National governments, multilateral institutions, nongovernmental organizations (NGOs), bilateral donors, humanitarian stakeholders, and philanthropic donors should make studying and improving the quality of care in settings of extreme adversity a high priority. More specifically:

• The international humanitarian system, multilateral organizations, and NGOs should identify priorities for assessing the quality of care in these settings and develop strategies for its improvement. Emphasis should be placed on addressing conditions that are particularly burdensome in these settings, such as treating conflict-related trauma and mental illness, optimizing the patient experience to ensure trust in providers, protecting providers from harm, and adequately managing chronic diseases.
• The National Institutes of Health (NIH) and other research funders should support primary and implementation research aimed at identifying what interventions work and in what contexts to improve health outcomes in fragile states and austere environments.
• Multilateral organizations and the United Nations System should create multistakeholder collaborations for the purposes of reviewing and vetting the available evidence; developing consensus on promising interventions for improvement; and identifying issues of leadership and accountability for quality of care in particular circumstances, such as conflict zones, humanitarian crises, and fragile states.