RWJF Report Examines Health Data Amidst Public Concerns | Healthcare Informatics Magazine | Health IT | Information Technology Skip to content Skip to navigation

RWJF Report Examines Health Data Amidst Public Concerns

April 3, 2015
by Rajiv Leventhal
| Reprints

The Princeton, N.J.-based Robert Wood Johnson Foundation (RWJF) and an independent advisory committee have released a report on health data, offering specific recommendations to better harness the data and address public concerns.

The report, “Data for Health, Learning What Works,” 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, and the information was gathered by a Data for Health advisory committee.

The recommendations outlined by RWJF include improving privacy and security safeguards, educating the public on the value of sharing personal health information and why it is so important, and investing in community data infrastructure. According to the report, innovations, such as Fitbit and Jawbone, as well as Apple’s ResearchKit, 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, director of the public health informatics institute and co-chair of the Data for Health 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.”

What’s more, RWJF has shared the report with various groups to help support data sharing, including the Office of the National Coordinator for Health Information Technology (ONC). In fact, Karen DeSalvo, M.D., National Coordinator for Health IT, participated in four out of five of the 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.

The report can be seen in its entirety here.



NewYork-Presbyterian, Walgreens Partner on Telemedicine Initiative

NewYork-Presbyterian and Walgreens are collaborating to bring expanded access to NewYork-Presbyterian’s healthcare through new telemedicine services, the two organizations announced this week.

ONC Releases Patient Demographic Data Quality Framework

The Office of the National Coordinator for Health IT (ONC) developed a framework to help health systems, large practices, health information exchanges and payers to improve their patient demographic data quality.

AMIA, Pew Urge Congress to Ensure ONC has Funding to Implement Cures Provisions

The Pew Charitable Trusts and the American Medical Informatics Association (AMIA) have sent a letter to congressional appropriators urging them to ensure that ONC has adequate funding to implement certain 21st Century Cures Act provisions.

Former Michigan Governor to Serve as Chair of DRIVE Health

Former Michigan Governor John Engler will serve as chair of the DRIVE Health Initiative, a campaign aimed at accelerating the U.S. health system's transition to value-based care.

NJ Medical Group Launches Statewide HIE, OneHealth New Jersey

The Medical Society of New Jersey (MSNJ) recently launched OneHealth New Jersey, a statewide health information exchange (HIE) that is now live.

Survey: 70% of Providers Using Off-Premises Computing for Some Applications

A survey conducted by KLAS Research found that 70 percent of healthcare organizations have moved at least some applications or IT infrastructure off-premises.