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Group Releases Framework for Data Privacy

Patient Privacy Rights (PPR) is pleased to announce the publication of its Privacy Trust Framework, a set of 75+ auditable criteria based on 15 key privacy principles. The framework enables objective measurement of how well HIT, platforms, applications, electronic systems, and research projects protect data privacy and ensure patient control over the collection, use, and disclosure of their health data. The published paper outlining the principles and standards set forth in the Trust Framework is available in the Social Science Research Network library and on PPR’s website.

The copyrighted Trust Framework was developed by the bipartisan Coalition for Patient Privacy, in concert with Microsoft and PricewaterhouseCoopers (PwC). The Framework was developed, tested, and validated on HealthVault over an 18 month period. It is grounded in Americans’ longstanding civil, human, and ethical rights to health information privacy and enables identification of HIT systems and products that comply with the 15 ‘gold standard’ privacy principles established by the bipartisan Coalition for Patient Privacy.

The Framework benefits patients by allowing them to easily see and compare which systems, applications, platforms, websites, and research projects are worthy of their trust. At the same time, companies and organizations will benefit as citizens reward them by participating in systems and using applications that distinguish themselves as trustworthy.

The Trust Framework can also play an integral role in building a vibrant, trusted research ecosystem. Individuals are more willing to participate in research when they know they control the use and further disclosure of personal health information and can choose which research projects they want to participate in. The Trust Framework offers research organizations and institutions the opportunity to demonstrate their commitment to informed consent and strong data security and privacy protections. The Framework can also be used for research about consent and factors that influence trust and data donation for research.

Source: Patient Privacy Rights