How We Can Uncover Childhood Health Outcomes Over a Lifetime

How We Can Uncover Childhood Health Outcomes Over a Lifetime




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.