September 29, 2016
Even if their approaches differ, philanthropies ultimately have the same core goal: to create a better future. Many philanthropies, including the Robert Wood Johnson Foundation (RWJF), have been working diligently for years to identify the root causes of health problems that affect populations across the nation and to develop solutions to those problems that extend across every aspect of our lives.
Nevertheless, life expectancy in the United States continues to lag other high-income nations, and we continue to lag in other key health indicators as well. With many different factors influencing health, the need for a trusted national source of longitudinal data that tracks how children's health is impacted by environmental, social, and economic influences has never been greater. This kind of cross-sectoral database could help researchers and policy makers see how different factors — including education, parenting style, exposure to chemicals, and the digital environment — affect the growth and development of children.
No philanthropic organization or academic institution has had the inclination — or the resources — to fund a study of this nature, even though such a study could have wide-reaching benefits — and despite the fact that most nations already have this kind of data, allowing them to recognize and address areas in which their children are struggling. The United Kingdom, for example, hosted a birth cohort analysis in 1958, 1970, 1989, and 2000 that has produced 3,600 studies and currently provides data free to researchers. At RWJF, understanding how factors related to where we live, work, and play impact our health — and finding novel ways to spread what's working in a given community — is at the center of our vision of a Culture of Health.
To that end, RWJF recently funded a National Academy of Medicine (NAM) Perspective Paper Series, Lifelong Health: Why the U.S. Needs a National Birth Cohort Study. The series was developed through consensus by numerous stakeholders to 1) explore the need for a national birth cohort study, and 2) to provide an exploration of the possible framework and design for how such a study might be conducted. For instance, the birth cohort study (BCS), which would follow children from gestation to age 20 and collect data on environmental, social and economic determinants of health, would complement the National Children's Study, a similar effort launched in 2000 by the National Institutes of Health (NIH) that ended in 2014.
Despite the termination of that effort, widespread interest in a BCS remains. In fact, last year alone, lawmakers included $165 million in NIH's budget for current and new cohort studies. But these new studies can't obtain the full wealth of data necessary to address the myriad chemical and social influences on a child’s development — or how they impact everything from infant mortality to persistent racial, ethnic, and socioeconomic disparities in health outcomes.
While a BCS would be enormously valuable, the sheer size of the effort makes it difficult for any single philanthropy to pull off. By the time the National Children's Study ended, it had spent $1.2 billion to track only 5,000 out of 100,000 kids enrolled. Clearly, the resources needed to conduct a long-term, intensive study would overwhelm even the wealthiest of philanthropies. However, philanthropy has a unique role to play in creating a framework for a national study like this.
Philanthropies, academic institutions, and the government all hold incredible amounts of data, most of which is siloed away from broader use. Many other organizations have a wealth of data from their work in the field that has been largely unused because they don't have the resources available to do anything with it. And academic institutions have long been afraid to release data from many of the studies they sponsor. Philanthropies, on the other hand, can — and are — leading the way in data integration. Indeed, RWJF's research initiative, Policies for Action, funds research using integrated data to uncover unique relationships between many different determinants of health.
While a government agency (or agencies) may be the only entity in a position to helm such an extensive and intensive multi-sectoral study, there are countless philanthropies and academic institutions that would be eager and well-positioned to convert the data into action. For children, in particular, understanding what might lead to better health outcomes is of the utmost urgency — before another generation falls victim to persistent social, environmental, and economic factors.
Ultimately, all Americans would benefit from the development of a national birth cohort study. Such a study also would spur efforts here at RWJF, as well as the efforts of others, to research and identify workable solutions to the social determinants of health. If we hope to improve our troubling national performance on global health indicators, we first need to understand what's driving our collective underperformance — and what can be done to reverse it.
Kerry Anne McGeary is a senior program officer with the Robert Wood Johnson Foundation.