This editorial was published in the Stanford Social Innovation Review on March 21, 2018.

In 2013, in southern Mozambique, foreign NGO workers searched for a man whom the local health facility reported as diagnosed with HIV. The workers aimed to verify that the health facility did indeed diagnose and treat him. When they could not find him, they asked the village chief for help. Together with an ever-growing crowd of onlookers, the chief led them to the man’s home. After hesitating and denying, he eventually admitted, in front of the crowd, that he had tested positive and received treatment. With his status made public, he now risked facing stigma, discrimination, and social marginalization. The incident undermined both his health and his ability to live a dignified life.

Similar privacy violations were documented in Burkina Faso in 2016, where community workers asked partners, in the presence of each other, to disclose what individual health services they had obtained.

Why was there such a disregard for the privacy and dignity of these citizens?

As it turns out, unbeknownst to these Mozambican and Burkinabe patients, their local health centers were participating in performance-based financing (PBF) programs financed by foreign assistance agencies. Implemented in more than 35 countries, PBF programs offer health workers financial bonuses for delivering priority health interventions. To ensure that providers do not cheat the system, PBF programs often send verifiers to visit patients’ homes to confirm that they have received specific health services. These verifiers are frequently community members (the World Bank callously notes in its “Performance-Based Financing Toolkit “that even “a local soccer club” can play this role), and this practice, known as “patient tracing,” is common among PBF programs. In World Bank-funded PBF programs alone, 19 out of the 25 PBF programs implement patient tracing. Yet the World Bank’s toolkit never mentions patient privacy or confidentiality. In patient tracing, patients’ rights and dignity are secondary to donor objectives.

Patient tracing within PBF programs is just one example of a bigger problem: Privacy violations are pervasive in global health. Some researchers and policymakers have raised privacy concerns about tuberculosis (TB), human immunodeficiency virus (HIV), family planning, post-abortion care, and disease surveillance programs. A study conducted by the Asia-Pacific Network of People Living with HIV/AIDS found that 34 percent of people living with HIV in India, Indonesia, Philippines, and Thailand reported that health workers breached confidentiality. In many programs, sensitive information about people’s sexual and reproductive health, disease status, and other intimate health details are often collected to improve health system effectiveness and efficiency. Usually, households have no way to opt out, nor any control over how heath care programs use, store, and disseminate this data. At the same time, most programs do not have systems to enforce health workers’ non-disclosure of private information.

In societies with strong stigma around certain health topics, especially sexual and reproductive health, the disclosure of confidential patient information can destroy lives. In contexts where HIV is highly stigmatized, people living with HIV are 2.4 times more likely to delay seeking care until they are seriously ill. In addition to stigma’s harmful effects on people’s health, it can limit individuals’ economic opportunities, cause them to be socially marginalized, and erode their psychological wellbeing.

Western countries, including the United States, Australia, New Zealand, and Canada “as well as many European countries” have enacted strong regulations to protect patient privacy. Citizens of low- and middle-income countries (LMICs), however, are often left exposed, as many governments do not have the capacity or resources to enact protections of their own. Even when policies do exist, such as in Mozambique’s Charter on Patients’ Rights and Obligations, which guarantees patient information confidentiality enforcement mechanisms are weak, allowing foreign-funded health programs to operate with impunity.

Consequently, global health practitioners use their own judgement when handling patient privacy in LMICs. For some, obtaining patients’ informed consent is enough””even though patient-provider power imbalances and limited service options often leave patients with little agency to say no. Others argue that because local cultural and societal norms differ from Western ones, privacy isn’t relevant. This argument ignores the fact that Western normative values are intrinsic to development programs””including those that address gender equality, where and how women should deliver their babies, democracy, and governance practices. Put another way, some practitioners seem to choose whatever arguments will justify their medicalized””rather than human-centered””approach.

To be clear: We know that the global health community is not operating out of malicious intent, or actively trying to widen equity gaps between patients in the West and patients in LMICs. Rather, the privacy violations they promote result from their sense of urgency to improve public health.

Still, despite good intentions, the very notion that the global health community has the supreme power to judge what constitutes the appropriate balance between patient privacy and public health is an affront to LMICs’ sovereignty and their citizens’ dignity. Beyond that, it speaks to the colonialist mindset’s strong grasp on the architecture of foreign assistance.

With $36.4 billion of development health assistance flowing annually, it is long overdue for the global health community to protect beneficiaries’ fundamental right to privacy. We recommend the following:

  • Enacting global regulations: At the global level, we urge the World Health Organization (WHO) to facilitate the development of a universal patient bill of rights. Beyond that, the WHO should build on its efforts to promote ethical practices in TB and HIV programs, and issue comprehensive program guidelines that protect patient privacy. Countries with large foreign assistance programs and multi-lateral agencies such as the World Bank, Gavi, and the Global Fund should be the first to champion this initiative.
  • Self-regulating: Until global measures are in place, bi-lateral funding agencies should commit to following the same privacy laws and protections that exist in their own countries within global health programs they fund in LMICs.
  • Ensuring compliance: Resolutions and commitments are not enough. Foreign assistance agencies must ensure compliance with privacy protections. To that end, agencies should develop self-regulatory systems, as they commonly do for internal corruption or sexual abuse, to address privacy violations. This means implementing mandatory patient privacy trainings for program managers, conducting internal and external program reviews, and enforcing penalties when violations are discovered. Additionally, externally financed programs in LMICs should include earmarks to support the design and implementation of country privacy laws and regulations.
  • Empowering citizens: Civil society in many LMICs is ripe and ready to advocate for patient privacy. Some civil society organizations, such as Namati, are already promoting patient rights through legal advocacy at the patient level. Many more, as we found in our analysis of more than 200 participatory governance activities across Africa, have the platforms, but not the awareness or funding to leverage those platforms for patient rights. Funders should invest in advancing civil society’s role in holding foreign assistance agencies accountable for adhering to privacy protections.

With the global push to achieve universal health coverage, global health must move beyond its paternalistic and medicalized approach. It must embrace a holistic view that prioritizes the dignity of all people, regardless of where they live.

Leah Breen, analyst and writer at ThinkWell, was instrumental in conceiving and writing this article. Mary Qiu, ThinkWell analyst, provided valuable research and writing support.

This editorial was published on Health Affairs Blog on March 9, 2018.

For nearly two decades, donors, policy makers, and public health practitioners have lauded performance-based financing (PBF) as a solution to strengthen health services and accelerate progress toward reaching global health targets. PBF links health care provider payments to the achievement of predefined indicators associated with better health. For example, a provider could receive a bonus for every child that she or he fully vaccinates. It’s thought that the financial incentive will motivate health workers, drive them to improve service delivery’s effectiveness, and ultimately lead to better health outcomes.

Although the global evidence based on PBF’s impacts is mixed, several rigorous impact evaluations have demonstrated statistically significant improvements across targeted indicators. Since gaining traction as a promising health financing approach, PBF proponents have focused on leveraging PBF for broader health system transformation. At present, the PBF community is packaging best practices to propel this change: what governance arrangements make the most sense when managing PBF, which indicators work best to measure progress toward achieving results, and how to best verify reported results. As the energy heightens around crafting the ideal PBF model, it’s time to take a step back to assess the appropriate context for implementing PBF in the first place.

Recently, we had the opportunity to rigorously measure the impact of two PBF programs implemented at scale in Mozambique’s Gaza and Nampula provinces. The programs””which aimed to use PBF as a tool to strengthen HIV, prevention of mother-to-child transmission of HIV, and maternal and child health services””had nearly the same design, took place during the same period, and were managed by the same development nongovernmental organization. Despite these structural similarities, their implementation contexts led to uniquely different results.

Our impact evaluation showed that in both provinces, PBF’s effects weren’t shown immediately; systems had to first adjust to the new approach. In Nampula, it took 14 months of exposure before indicators (such as complete vaccination) responded to PBF. In Gaza, however, it took 20 months””half a year longer. It wasn’t just the length of adjustment time that differed. Out of the 18 indicators we analyzed, one-third responded to PBF in one region but not the other. For example, in Nampula, there was a 60.5 percent increase in the number of adults co-infected with HIV and tuberculosis who initiated antiretroviral therapy for the first time. However, there was no change in Gaza. Conversely, in Gaza, there was a 45.2 percent increase in the number of HIV+ children 0-23 months of age who initiated antiretroviral therapy treatment for the first time, but in Nampula, there was no change. For indicators that did show improvements in both provinces, most had highly variable magnitudes of change. For example, in Gaza, there was a 221.7 percent increase in the number of HIV+ women who received a family planning consultation and a modern contraceptive method, while there was a 162.6 percent increase in Nampula.

Simply put, PBF responded differently in each province, despite the nearly identical program design and implementation.

Why did the impact evaluation tell such a different story in each province, despite the nearly synonymous program design and implementation approach? Our qualitative research on PBF’s health systems impacts (forthcoming) suggests that several contextual factors steered the program’s effects and results. These factors include differing baseline service provision rates; divergent subnational approaches to rolling out a national antiretroviral therapy plan; and distinct characteristics of subnational governance, human resources, pharmaceutical management, and quality of care. In short, the provinces’ institutional, geographic, and cultural contexts were major drivers of program effectiveness.

In a range of countries where we have worked, donor agencies and implementing partners have taken a cookie-cutter approach to designing PBF programs. A look at the 25 World Bank-supported PBF initiatives show very similar designs across all programs, regardless of their contextual nuances. Critical questions, such as a country’s ability to disburse PBF bonuses on time or whether the country has the capacity to separate politics and patronage from the verification process, are often glossed over. When evaluation results show poor performance, PBF ideologues often dismiss the findings as simply rooted in weak design or implementation practices. Taken together, these factors often constrain a country’s ability to have an honest and assessment-based dialog on whether PBF makes sense in the first place.

PBF can have enormous impacts under the right circumstances. We saw this in some services’ strong performance in Mozambique. But instead of racing toward PBF as a silver bullet, funding agencies, policy makers, and implementers should first conduct a contextual assessment that accounts for political, legal, institutional, epidemiological, market, and cultural factors. This assessment should answer why priority services are not performing and whether PBF can really offer a solution. Additionally, funding agencies and policy makers should compare other possible means to improve health system performance to find out whether PBF really is the right fit””or if there is a more relevant approach out there. These considerations should account for the projected costs of implementing PBF vis-à-vis alternatives.

Before launching isolated PBF pilots, policy makers and implementers must evaluate how PBF will synergize with other health financing modalities, such as broader strategic purchasing or input-based budgeting. For programs already underway, their corresponding impact evaluations should go beyond the basic metric of statistical significance to focus on the magnitude of effect and its duration. When assessing whether a financial bonus would actually have an impact, policy makers and implementers must understand what drives health worker performance. At a higher level, PBF proponents must consider the broader political economy of sustaining PBF as a legally legitimate tool.

PBF’s evolution is not different from many other global health trends purporting to transform health system performance. Policy tools, such as health financing strategies and fiscal space analyses, are promoted as fundamental to health systems development””even in countries undergoing fiscal crises or with limited political interest in health financing. Previously, community-based health insurance was all the rage””now large-scale strategic purchasing is emerging as the next silver bullet to revitalize health systems. Independent of countries’ values and capacities, foreign assistance providers have, for decades, individually lobbied for their own ideologically driven prescriptions on topics such as user fees, free health care for all, and private health care. Donors, policy makers, and practitioners must shake ideology’s grasp and shift their mindset to temper PBF, and trending strategies like it, with an understanding of the contexts of countries themselves.