Robert Wood Johnson Foundation releases Data for Health: Learning What Works

Dr. Karen B. DeSalvo | April 2, 2015

The Office of the National Coordinator for Health Information Technology (ONC) is committed to advancing an interoperable learning health system that impacts individual, community and population health. To achieve this goal in the next several years will require collective action from all public and private stakeholders, including consumers and community-based groups outside of what is traditionally considered the expected set of technology and health care entities.

The Robert Wood Johnson Foundation (RWJF) has long been a leader in collaborative efforts to advance the health care system in to a learning health system. Through their Data for Health initiative launched last Fall, they have undertaken an ambitious effort, aimed at assessing how data and information can be used to improve health in our country. After hosting a series of “Learning What Works” events in five cities throughout 2014 to hear from local leaders, residents, and professionals from a wide range of sectors, today, RWJF released Data for Health: Learning What Works, prepared by the Virginia Bioinformatics Institute at Virginia Tech.

Funded and conceptualized by RWJF, the Data for Health initiative is led by an advisory committee of respected leaders in health IT, who hosted these sessions last year to learn what health information is important to communities across our country, and how this information can help people lead healthier lives and improve overall health. ONC had the opportunity to attend all five of these listening sessions in Phoenix, Arizona; Philadelphia, Pennsylvania; Charleston, South Carolina; San Francisco, California; and Des Moines, Iowa. Meeting communities where they are is important to our team, and attending these sessions provided us with insight about how the health system can be improved through the use of health information, and the challenges we must address moving forward.

I want to thank RWJF for inviting me and the ONC team to participate in these listening sessions. In particular, I appreciate the leadership of RWJF President and CEO Dr. Risa Lavizzo-Mourey, who powerfully noted that “the sheer volume and velocity of data at our fingertips today is unprecedented”—an elegant statement which captures the impetus for Data for Health. At these sessions we shared the history of ONC, gave an update on our current work to refresh the Federal Health IT Strategic Plan and our efforts planned and underway to achieve an interoperable learning health system (which are now outlined in Connecting Health and Care for the Nation: A Shared Nationwide Interoperability Roadmap Draft Version 1.0). These sessions also allowed us to ask questions to better understand health priorities and challenges in each community.

RWJF recognizes that to build a Culture of Health, it will take collective action by many across the country, and not just in the five communities that we visited. Throughout its history, RWJF has worked to improve the health and health care of all Americans. They have a unique capacity and mission to address the most pressing issues facing our society. They have aptly identified health IT and learning how people want to access, use and protect data to lead healthier lives as an area of interest. They acted swiftly to issue this report today.

Data for Health: Learning What Works captures three main themes and a set of recommended next steps in the following areas, which resounded across all five “Learning What Works” sessions:

  • Establish the data exchange value proposition: Community members emphasized that people do not have a clear understanding of why certain data should be shared or used;
  • Build trust and community data competence: One participant noted that “data moves at the speed of trust,” a theme which rang loudly in all five sessions. Participants expressed concern over organizational and technical trust issues; and
  • Build community data infrastructure: Communities have a greater chance of succeeding at health and well-being when organizations work together to create networks that integrate health with social and community services.

To make progress in addressing these themes, a collective impact model that includes the full spectrum of people and organizations in and outside of the health IT or health care fields, and wholly acknowledging and acting on the social determinants of health, is essential. RWJF recognized the importance of diverse perspectives during each “Learning What Works” event, and invited residents, social service organizations, city planners, public health departments, school districts, local businesses, housing and community developers, clinicians, hospitals, researchers and scientists, consumers, payers, state and local leaders, and other thought leaders in these communities.

A favorite question of mine, asked during the sessions and included in the report, is the following: “The real question is not what data we want to collect, but what problem are we trying to solve?” I believe the real problem we are trying to solve is how to advance the public’s health wherever people live, work, learn or play, using information and data as a tool. I look forward to continuing this conversation with RWJF, the Data for Health advisers, and communities across our country to improve overall health.