Posted on November 26, 2018 at 10:52 PM
This post can also be found as the November 2018 editorial in the American Journal of Bioethics.
by Alonzo L. Plough, MD, MPH
In their paper, “Health Research Priority setting: The Duties of Individual Funders,” Pierson and Millum raise an important set of ethical questions of great relevance to grant making organizations. What values and implicit prioritizations guide which research topics we chose to fund? How do we balance our duty to our organization and its goals and mission with the need for knowledge generated from research to address broader societal issues and concerns? What are the obligations of funders of research to consider who benefits from the new knowledge? Are there equity principles that should underlie these resource allocation decisions?
As the largest foundation in the United States entirely devoted to funding in health and heath care we ask similar questions for ourselves, particularly around the social value of our research investments. In Pierson and Millum’s typology, RWJF is an independent nonprofit research organization and all of our funding is derived from a generous and forward thinking endowment from Robert Wood Johnson, then CEO of Johnson and Johnson, nearly 50 years ago. His vision was to improve health and health care in America, especially for those most in need. Our Culture of Health Action Framework reflects this vision and drives our activities across the Foundation. The framework is rooted in extensive evidence and experience that poor health and wellbeing are the often a result of social and economic disadvantage. Our research and programmatic funding is directed toward building this Culture of Health defined as when “individuals, communities, and organizations prioritize and promote enhanced wellbeing for all and value health as fundamental to the nation’s social and economic future”. To achieve this long term goal requires an evidence base generated from both research that we fund and influences we can have on other funders. Our funded research goes beyond simply measuring disparities in health outcomes and is focused on developing usable and actionable knowledge to eliminate these gaps and build health equity across the nation. We define health equity as “everyone has a fair and just opportunity to be healthy. This includes removing obstacles to health such as poverty, discrimination, and their consequences – including powerlessness and lack of access to good jobs, education, housing, environments and health care”. As such, our funded research addressees these and other social determinates of health.
We would agree with the authors’ assessment that NPO’s have a constitutive obligation to the state and the general population due to the tax emptions granted by the federal government. This duty is a shared responsibility of our Trustees and all of our staff and expressed in a set of guiding principles intended to operationalize this general duty. Two of these principles address most specifically the prioritization and the general duties of beneficence and justice that Pierson and Millum suggest:
- We seek bold and lasting change rooted in the best available evidence, analysis and science openly debated.
- We act as good stewards of private resources, using them to advance the public’s interest with a focus on helping the most vulnerable
We also believe that our general duty extends beyond the subject area of the research we fund but to the manner in which that research is conducted. We emphasize a focus on equity, engagement of the populations who experience health equity challenges, and researchers who themselves have diverse backgrounds, interdisciplinary methods, and an action oriented perspective. RWJF is building a robust evidence base to inform policies and practices across sectors that are critical to building a culture of health. One way we do this is through four investigator initiated research programs all emphasizing the translation of research into action:
- Evidence for Action awards grants to encourage and support innovative, rigorous research on the impact of programs, policies, and partnerships on health and well-being, with a particular focus on research that will help advance health equity. To achieve this goal, the program emphasizes working with new partners from diverse sectors, disciplines, and backgrounds and investing in efforts to support new research grantees from organizations and institutions that are underrepresented in the Foundation’s grant making portfolio, especially those who are closely connected to work happening in communities
- Systems for Action builds a Culture of Health by rigorously testing new ways of connecting the nation’s fragmented medical, social, and public health systems. Studies conducted through the S4A program test innovative mechanisms for aligning the delivery and financing systems for medical, social, and public health services, with a focus on estimating their impact on health and health equity.
- Policies for Action research examines policies and laws that are traditionally and directly correlated with health outcomes, but also nontraditional areas of focus that influence population health, well-being and equity—including policies and regulations from areas such as education, economics, transportation, justice, and housing. P4A is interested in learning how national, state or local policies can promote lifelong health and health equity for individuals, families, and communities; as well as what enabling factors promote the adoption and spread of good policies.
- Health Data for Action aims to reduce the barriers often faced by researchers who want to access rich, but proprietary data by serving as a conduit between data owners and interested researchers. Through each funding opportunity, RWJF will make data from unique data owners available to researchers who conduct relevant, innovative, and actionable research that uses the available data to answer important, policy-relevant questions.
Organizations that fund research also influence the academic and research communities who seek funding and the opportunity to publish the output of their research. At RWJF we believe our general obligations lead us to a strategy of catalyzing change within these research fields to encourage more research directed towards improving health equity and greater acceptance of community participatory approaches to research. Currently, we are convening governmental and private funders of health research in a learning community to advance our collective understanding of how research funding can better address inequality and improve health equity. We also work with, and in some cases fund, academic health journals to provide publishing opportunities for innovative nontraditional research that advances health equity and open access policies that allow more people to benefit from this research.
Pierson and Millum’s paper is a call for more alignment between research funding and critical social problems in a way that also provides value to the populations who experience these problems. The examples presented in this editorial are some of the ways RWJF uses the position, resources and tools of philanthropy to approach research funding toward that alignment goal.