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Freeing Health Data, a Common Theme at Health Datapalooza

Published: June 10, 2015

HHSHealth CareHealth IT

A number of speakers at last week's Health Datapalooza conference in Washington, D.C., encouraged the sharing of health data as a key to improving quality of care.

From a federal perspective, HHS is not shying away from the challenge. According to Damon Davis, the director for the HealthData.gov initiative, HHS aims to put health data in the hands of researchers, policy makers, innovators, other government agencies and the public in order to improve population health. To that end, the HHS Idea Lab is in the midst of modernizing and re-launching HealthData.gov, a catalog of health, social services, and research data available for public reuse.

According to Davis, a goal of the new site is to improve performance by upgrading the underlying technology platform. The first step was to migrate the existing data to a Drupal-based, open source platform. The plan is to provide users with dashboards and robust tool sets over time. The site is currently in beta form.

Last year HHS.gov received a refresh, including a new mobile-first design, along with the addition of smart search and tools for content sharing and engagement.

Additionally, NIH is growing its open data network to make data sharing easier among its 27 institutions and the community. "Our approach to this is to establish a Commons," said Phil Bourne, NIH's associate director for data science. The Commons is based on several platforms, including public and private clouds.

NIH is also working with data-level metrics to measure usefulness of data and capture activity around research data. Bourne hopes to drive more structure into the data and encourage researchers to share their data.

CMS is also participating in the drive to release health data. "We are aiming directly at shaking up health care innovation and setting a new standard for data transparency," Andy Slavitt, acting administrator of CMS, said at the conference.

CMS announced plans to release health payment and health care data to entrepreneurs and developers. Data regarding provider analysis, beneficiaries, Medicare claims, chronic illnesses, utilization and cost will be available for use in commercial apps for the first time.

Since 2010, CMS has released over 400 datasets in its public data mart. In the past, CMS only release data to vetted academics and researchers via the Virtual Research Data Center (VDRC) which was launched in 2013.

Details of CMS' new innovator program are still being developed. Some of that information will be publiclly available, but other datasets will be more closely held and available only through privacy and information sharing agreements with CMS. The new program is expected to launch in September 2015.

CMS also plans to begin releasing data on a quarterly basis versus annually. "In an information age, it is just not acceptable that the most recent Medicare data available to researchers is from 2013," Slavitt said.