Following listening sessions held last year in five U.S. cities, the Robert Wood Johnson Foundation has issued recommendations on how health data can be collected, shared, protected, and translated in ways that are useful to consumers, organizations and communities nationwide.

The explosion of health data from electronic health records, wearable sensor technology and other sources has generated “excitement” about the potential of turning the tsunami of data into valuable information to improve health and wellness, according to RWJF. However, this promise will only be fulfilled “when people both can access the data and even more importantly trust they can do that with confidence.” For now, “people-related” barriers and technical challenges are standing in the way of “turning all that data into helpful information that people could use to improve health and wellness.”

RWJF charged an advisory committee of public health, physician, research, technology, consumer, delivery system and local government stakeholders to investigate how individuals and communities are already using data to improve health, what new data they want to access, and how to collaborate to share and secure data.

Also See: Nationwide Listening Sessions Seek Community Feedback on Health Data

RWJF then commissioned the Virginia Bioinformatics Institute at Virginia Tech to discern from the advisory committee’s sessions three main themes and recommended actions:

*Establish the data exchange value proposition. Listening session participants emphasized that people do not have a clear understanding of why certain data should be shared or used.

*Build trust and community data competence. The themes of trust and protecting data “rang loudly” in listening sessions across the country.

*Build community data infrastructures. 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 healthcare fields, and wholly acknowledging and acting on the social determinants of health, is essential,” writes National Coordinator for Health IT Karen DeSalvo, M.D., in a blog about the RWJF report.

DeSalvo and ONC officials had the opportunity to attend all five of the 2014 listening sessions—held in Philadelphia, Phoenix, Des Moines, San Francisco, and Charleston, S.C.—on which the report was based.

“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,” DeSalvo adds.

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