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Sharing Health Data: The Why, the Will, and the Way Forward

 

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ÌýNew Special Publication from @theNAMedicine: Sharing Health Data: The Why, the Will, and the Way Forward: #NAMLeadershipConsortium @PCORI

ÌýRead a new @theNAMedicine publication that outlines 11 case studies illustrating innovative approaches to effectively & safely share health data between and among health systems, researchers, and patients: @PCORI #NAMLeadershipConsortium #healthdata #hcldr

Ìý#COVID19 has accelerated & demonstrated the power of sharing health data, but barriers remain. A Special Publication from @theNAMedicine outlines case studies of innovative approaches to addressing these barriers: #NAMLeadershipConsortium #hcldr @PCORI

ÌýWhile the case studies collected in a new @theNAMedicine publication demonstrate different use cases, they collectively show how data sharing can improve health, health care, and health equity: #NAMLeadershipConsortium #patientcentered #healthdata @PCORI

ÌýA new @theNAMedicine Special Publication includes health data sharing case studies featuring @LunaDNA_, @MayoClinic, and @myopennotes, among others. Read more: #NAMLeadershipConsortium #patientcentered #healthdata #hcldr @PCORI

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In the time leading up to the COVID-19 pandemic, there was widespread reluctance around sharing health data. During the unprecedented pandemic, both data and a lack of data illuminated profound shortcomings that affected health care and health equity. Yet, a silver lining of the pandemic was a surge in collaboration among data holders in public health, health care, and technology firms, suggesting that evolution in health data sharing is visible and tangible.

A new NAM Special Publication, supported by the Patient-Centered Outcomes Research Institute, features some of these novel data-sharing collaborations, some of which were born directly out of the pandemic and several that were underway as COVID-19 swept the globe. The focus of this publication is to identify and describe exemplar groups to dispel the myth that sharing health data more broadly is impossible and illuminate the innovative approaches that are being taken to make progress in the current environment. It also serves as a resource for those waiting in the wings, showing how barriers were addressed and harvesting lessons and insights from those on the front lines.

In the meantime, knowledge is already available to foster better health care and health outcomes, and attention to health data sharing can enable these unparalleled advances:

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