Listening is Believing: Can Oral History Catalyze Greater Investment in Health and Human Rights?

Summer Peet, Jonathan Cohen, Laura Ferguson, and Sofia Gruskin

In 2020, just as COVID-19 was revealing the human rights underpinnings of a global pandemic, one of the world’s largest private philanthropic programs devoted to health and human rights—the Public Health Program of George Soros’s Open Society Foundations—was closing its doors. This untimely coincidence highlighted a need to document and share lessons learned from decades of philanthropic investment in rights-based health interventions. This need is only underscored by continued decreases in global health funding among low-income and lower-middle-income governments and external donors.[1]

To capture the lessons learned, the Open Society Foundations supported the USC Institute on Inequalities in Global Health to document the evolution of its grant making for rights-based health interventions in the context of larger socio-political shifts. The result—The Health and Human Rights Oral History Project (HHROHP)—captures the decisions, discussions, and dynamics behind some of the most impactful health and rights interventions of the past several decades. HHROHP comprises 29 long-form video testimonies from diverse figures in the health and human rights movement. Most of the testimonies are stories from former staff and grantees, while others feature key pioneers in the field, providing a historical record and a demystification of what funding health and human rights looks like in practice.[2] By drawing back the curtain to understand critical interventions at the community, state, and regional levels, and the challenges, failures, and successes that preceded them, the archive deepens understanding of how philanthropy can work to translate international human rights principles into concrete health programs and campaigns.

HHROHP’s distinctiveness is rooted in its use of oral history to provide more granular detail about health and human rights efforts, using a philanthropic lens, than what is currently available in the public record. Oral history is particularly well suited to capturing the history and practice of philanthropy, which by its nature is a field where many decisions are undocumented and made outside of public view. As an example, listeners not only hear programmatic details about Soros’s bold investment in TB treatment in Russian prisons, but also about the negotiations with Russian prison officials needed to make the program possible. They learn that it was concern for the prison guards, not for the prisoners, that convinced the authorities to let the TB doctors inside, revealing something critical about the political context that underpins health and human rights work.

For those accessing the archive, the interviews offer a fuller, more accurate version of both the past and the processes of this sort of work than published material would, especially in a field where the starting point and the results are often the two points in time best captured. Of crucial importance to current and future public health challenges, they offer a nuanced and critical understanding of public health as a political process.

The public health topics covered in the collection are far reaching and include (in order of depth of coverage) harm reduction, access to medicines, sexual and reproductive health and rights, HIV/AIDS, health governance, mental health, ethnicity and health equity, law and health, sex workers’ rights, palliative care, health systems reform, and health media and narrative change. The regions covered, again in order of depth of coverage, are North America, Europe, Africa, Eurasia, Latin America, and Asia-Pacific. The period of history covered across the full collection is roughly 1970 to 2023. Some interviews discuss little known activities, others draw out the individual stories and experiences of events that may already be rigorously documented, but only from one lens or viewpoint, thus giving researchers a fuller picture of how interventions were actually conceived, crafted, and implemented.

The collection includes program officers, board members, grantees, and advisors grappling with some of the enduring questions that have defined the health and human rights field over the past 30 years. While those looking for clear answers to these questions may be disappointed, those seeking to deepen understanding of the interlinkages between public health, democracy, solidarity, and economic policy—especially their interplay in programmatic contexts—will be challenged and enlivened. Critical questions that interviewees reflect on include:

  • What is the relationship between targeted services for vulnerable and marginalized groups and the health and welfare of the population as a whole? Interviews with Michèle Pierre-Louis, former prime minister of Haiti and president of FOKAL, writer and activist Sisonke Msimang, who previously served as executive director of the Open Society Initiative for Southern Africa, and Umunyana Rugege, executive director of SECTION27, among many others, reflected on direct experiences with an equity-based approach that identifies who and where the most marginalized and vulnerable populations are, and tailored policies and programs to people’s unique needs.
  • What is the relationship between public health, politics, and democracy? It has been contended that countries that cultivate the free exchange of ideas, enable human diversity, regulate the private sector, hold powerful actors to account, and institute other democratic safeguards are more likely to attain positive health outcomes than those that slide into authoritarianism and corporate capture. Among the many interviews that address this question is that with Denise Namburete, a health advocate from Mozambique who tells a gripping story of taking on state corruption as a way of protecting her country’s modest health budget from misappropriation.
  • When can attempts to solve complex problems lead to greater harm? Health and rights experts have argued over the years that technological “silver bullets,” intrusive curbs on human behavior, and attempts to hide, detain, or punish “difficult” populations can lead to unintended consequences, compared to efforts focused on empowering and enabling diverse people to make healthy choices. Many interviews address this question including Raluca Bunea who played a leading role in in Europe and Eurasia for many years, and Oanh Khuat, a leader in HIV and harm reduction interventions in Vietnam.
  • What is the impact of neoliberal economic systems on health? In a context where multiple private philanthropies are taking on economic inequality and injustice, and where COVID-19 has demonstrated the negative effects of privatizing health care, interviewees’ stories raised the question whether it is possible for a philanthropic sector built on accumulated and tax-sheltered wealth to move the needle on this issue. Oral histories with leaders in access to medicines, including Tahir Amin, co-founder and CEO of the Initiative for Medicines, Access, and Knowledge (I-MAK), and Robert Weissman, the president of Public Citizen, point to this reality and chart the challenges and success of the past several decades of advocacy in this space.
  • What is the interplay between solidarity and individualism in public health? Individual behavior changes have long been a cornerstone of successful public health interventions, yet there is growing appreciation that, in an interdependent and interconnected world, the health of any one person is not simply in their own hands. Many interviews in the collection question the wisdom and limitations of an individualized approach to public health, including the failure to share human knowledge and capacities, the limits of unredistributed economic wealth, and the need to make sacrifices to guarantee the social determinants of health.

The 29 interviews in this collection are meant to inspire others, including funders, to ask challenging questions. And indeed, while the initial phase of the HHROHP came to a close in late 2022, in early 2023, a new phase of the project was initiated; spearheaded by University of the Witwatersrand, this phase seeks to produce a critical analysis and evaluation of the inaugural set of oral histories as a way of catalyzing the expansion and use of the archive. Of particular interest to Wits researchers is the notion of oral history as an activist history—a history that is meant to be used to advance social justice and, in this case, better human health through the advancement of human rights.

Situated within the context of the emergence and evolution of the field of health and human rights, HHROHP offers one foundation’s blueprint for how such interventions have been executed, demonstrating both their inherent value and their practical feasibility. We hope that scholars and practitioners in a range of fields—from health and human rights, to the history of public health, to the growing field of philanthropy studies—will find in HHROHP a rich trove of primary source material from which to understand the thinking and reasoning behind a diverse set of impactful health interventions, and from there pave the way for how we invest in health and human rights for the future.  Click here to access HHROHP

Summer Peet is a senior program officer with the USC Institute on Inequalities in Global Health, Los Angeles, United States.

Jonathan Cohen, JD, MPhil, is a professor of clinical population and public health sciences at the University of Southern California (USC) and director of policy engagement at the USC Institute on Inequalities in Global Health, Los Angeles, United States.  

Laura Ferguson, PhD, is an associate professor of population and public health sciences at the University of Southern California (USC) and director of research at the USC Institute on Inequalities in Global Health, Los Angeles, United States.

Sofia Gruskin, JD, MIA, is a distinguished professor of population, public health sciences and law at the University of Southern California (USC), chief of the Disease Prevention, Policy and Global Health Division at the USC Keck School of Medicine, and director of the USC Institute on Inequalities in Global Health, Los Angeles, United States.

References

[1] A. Glassman, J. m. Keller, and E. Smitham, “The Future of Global Health Spending Amidst Multiple Crises.” Center for Global Development. Jan 29, 2023, available at https://www.cgdev.org/publication/future-global-health-spending-amidst-multiple-crises.

[2] One of the authors directed the Open Society Public Health Program from 2016-2021, and another worked for the Communications Team at the Open Society Foundations from 2018-2020.