Report Details Public's Hopes, Fears About Using Data to Improve Health

Washington, D.C.—An independent advisory committee, with support from the Robert Wood Johnson Foundation (RWJF), today released Data for Health, Learning What Works. The report gives an overview of the insights, concerns, and ideas that communities shared during “listening sessions” about how to harness data to improve health. Local leaders, residents, and professionals from a wide range of sectors offered thoughts on what data was important to them for improving health in their communities and what is needed to facilitate useful data sharing. The listening sessions took place in five cities across the country in late 2014.

“The power of data is not the data itself: It is in how we use this information to address our country’s health problems,” said Risa Lavizzo-Mourey, MD, MBA, RWJF president and CEO. “The recommendations put forth by the Advisory Committee provide a blueprint for how we can effectively share data to help build a Culture of Health where everyone has the opportunity to live longer, healthier lives.”

Vast amounts of data are being collected through apps and self-tracking devices, like Fitbit and Jawbone, that can passively track our sleep, exercise, and other behaviors. Also, new technologies, like Apple’s ResearchKit and Alivecor’s heart monitor, are making health data more accessible to doctors and researchers. These innovations present an unparalleled opportunity to harness data to improve health, yet the public’s concerns about privacy, combined with a lack of infrastructure for accessing and protecting their information, pose significant barriers to progress.

“Data moves at the speed of trust,” said David Ross, ScD, director of the Public Health Informatics Institute and co-chair of the Advisory Committee. “Those are the words we heard from people across the country. As a nation, we need to strike a balance between privacy and the free flow of information.”

The report also comes at a time when the federal government, health care systems, public health agencies, community leaders, businesses, and consumers recognize the need to share data across sectors and between organizations in order to improve health at multiple levels. In January, the Office of the National Coordinator for Health Information Technology (ONC) released its interoperability roadmap, with steps to expand secure sharing and use of electronic health information over the next few years. RWJF has shared the Data for Health report with various groups to help support data sharing, including ONC as they move forward with their national health information technology strategy.                               

Karen DeSalvo, national coordinator for Health Information Technology, participated in four out of five of the Data for Health listening sessions to gain perspective on the concerns, aspirations, and challenges that communities face in collecting and sharing data. The listening sessions helped establish elements for inclusion in a national consensus agenda and shaped the Advisory Committee’s recommendations, which fell across these three key areas:

• Establish the value of data and communicate the significant public health benefits of capturing and sharing health data.
• Ensure data privacy and security, and build trust with both individuals and communities before collecting their data.
• Build community data infrastructures that integrate information on health with social and community services, and support collaboration across sectors.

Key Recommendations in the Data for Health report include:

• Strengthen and modernize policies governing data to protect personal health information, account for new technologies, and implement policies that address new security risks as they arise. Most federal and state laws protecting the privacy of health data are years (and in some cases, decades) old.
• Establish the equivalent of a Bill of Rights for individuals who wish to access their own personal health data. Policies should establish clear, equal rights for individuals to obtain their health records, and empower them to make better decisions about their health and contribute to decisions that can improve the health of their communities.
• Invest in community data sharing infrastructure and initiatives to create networks that integrate health with social and community services, and support collaboration across sectors. A local data infrastructure is one of the most effective tools for monitoring and improving health across communities.
• Launch a broad public education awareness campaign on the value of data use and exchange. The widespread adoption and use of data for improved health depends on helping individuals, communities, and stakeholders see the benefits.
• Launch a pilot Code for America data analytics program that creates open-source applications for cities and municipalities to promote greater transparency in public health data. This could be as simple as building a community dashboard that combines data from existing government databases.
• Create a Community Resource Scorecard that provides information on how communities are being supported to improve health. The Scorecard would offer common indicators to facilitate comparisons across communities, as well as more granular sub-county and district level data to address their own concerns and interests.
• Capture and use data generated by social media to reveal local and national health trends, and improve health across the country. Real time public health data captured through social media platforms are increasingly at the forefront of behavioral measurement, disease surveillance, and health promotion.

“Ultimately, we need to develop a data infrastructure that is bi-directional, where communities can communicate what they want and receive something of value in return,” said Ivor Horn, MD, MPH, Advisory Committee co-chair and medical director of the Center for Diversity and Health Equity at Seattle Children’s Hospital. “The data and the technology to build this infrastructure exist. But first, we need to understand how communities are using and want to use the data, and establish trust for exchanging this information.”

Data For Health Advisory Committee

Chairs

Ivor Braden Horn, MD, MPH, medical director, Center for Diversity and Health Equity, Seattle Children’s Hospital

David A. Ross, ScD, director, Public Health Informatics Institute

Advisers

James J. Augustine, MD, associate professor, Wright State University

David Blumenthal, MD, MPP, president and chief executive officer, The Commonwealth Fund

Larry A. Green, MD, professor and Epperson-Zorn endowed chair for innovation in family medicine, Department of Family Medicine at the University of Colorado School of Medicine

Karen S. Martin, RN, MSN, FAAN, health care consultant, Martin Associates

David McCallie Jr., MD, senior vice president for medical informatics, Cerner

Deven McGraw, JD, MPH, LLM, partner, Manatt, Phelps & Phillips, LLP

Erin Moore, family partner, Cincinnati Children's Hospital

Gilberto Salinas, MPA, chief clinical officer, Rancho Los Amigos National Rehabilitation Center

Ida Sim, MD, PhD, professor of medicine, University of California, San Francisco and co-founder, Open mHealth

Daniel Stein, MBA, president, Stewards of Change Institute

David Whitlinger, executive director, New York eHealth Collaborative

About the Robert Wood Johnson Foundation

For more than 40 years the Robert Wood Johnson Foundation has worked to improve health and health care. We are striving to build a national Culture of Health that will enable all to live longer, healthier lives now and for generations to come. For more information, visit www.rwjf.org. Follow the Foundation on Twitter at www.rwjf.org/twitter or on Facebook at www.rwjf.org/facebook.

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