Happy 90 Days Post-Data Independence Day!! Ninety-three days to be precise.
Since the GetMyHealthData campaign launched on July 4th, volunteers have been requesting their health data and reporting back to us on their experience. Their reports illuminate a pathway for improving data access for every American. These “Tracers,” as we call them, have been an invaluable source of information — a reality check that while the laws, policies and technologies exist, they aren’t always implemented in ways that work – for patients OR for health care organizations. The experiences and outcomes Tracers have shared have also been remarkably thematic. We’re proud today to release a Tracer Storyboard that outlines these common themes, challenges and bright spots.
While there are bright spots out there, many Tracers report frustrating experiences that point to real opportunities for improvement. For example, many provider organizations want and need to know more about patients’ right of electronic access under HIPAA. We are proud this week to announce a collaboration with AHIMA, the Alliance for Nursing Informatics, Flip the Clinic, GW’s Health Information and the Law project, and Waldo Law Offices to develop and disseminate a new resource for health care organizations: HIPAA Fact Sheet: The P is For Portability. The HIPAA Infographic was designed collaboratively with these organizations to be a helpful, easy-to-use, one-page guide to some of the most important aspects of the law governing electronic health data.
In other Partners news, we are also proud to have received support from the Robert Wood Johnson Foundation for 12 months of intensive work. Huge thanks to RWJF and the individual donors who have made this work possible!
The technology community has been incredibly interested and supportive of this movement to liberate data and get it into the hands of consumers. They stand willing to help, and we’ve been learning about the barriers they encounter as they try to gather data on patients’ behalf. We’ve also learned about their privacy policies and practices, and helped consumers evaluate these policies through our web page for apps. Next, we’ll be urging as many tech companies as possible to adopt ONC’s Model Privacy Notice to make comparing complex and variable policies easier for consumers.
#Policy & Public Awareness
We have worked hard to recruit Tracers and learn from their stories, which we have been actively sharing with Congress and the Administration. That includes testimony before a key U.S. Senate committee, and a federal advisory group on Privacy & Security. We have also continued to actively engage high-level policymakers about how important public policies have been implemented in practice. Further, media outlets across the country have continued to be interested in these important issues. Two mainstream news outlets have provide significant coverage of the resources that GMHD provides to patients and providers: the Wall Street Journal and Los Angeles Times. We are thrilled to see growing public interest in getting health data.
We invite you to join us – as a partner, a Tracer, supporter or an innovator. In this short window of opportunity, we must to come together and accelerate progress and innovation like never before. Together we can ensure that the GetMyHealthData movement enables every American to have the kind of life saving access to their health records that they need and deserve.
PS: Our next Tracer Talk – a public call for anyone interested in tracing with us — is this Wednesday at 2pm Eastern! Join here.
Erin Mackay & Christine Bechtel