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Health Data Bill of Rights

Every movement needs its founding principles

Draft Version: V 0.9 Draft Status: This document is considered draft and the content in any form must be marked accordingly and identified by the version number. We are currently accepting comments which can be sent to info@healthdataconsortium.org.

Preamble

We have undertaken to set forth a set of shared principles that we hope will create common ground amongst the many participants in the health care ecosystem in America. Improving the health and well-being of our nation is of critical importance and utterly dependent on our ability to robustly leverage health data to learn more about what leads to better health in our diverse populations. Our goal is to establish overarching principles that recognize both the imperative to put data to work for better health and the need to do so in a responsible way that respects individual privacy. A myriad of individuals, institutions, and organizations play vital roles in this endeavor, and our hope is that these principles recognize and honor their contributions. We intend these principles to provide the foundation for our work, from developing responsible information privacy policies, to implementing accepted standards for data usage, to developing new collaborative business models. We hope you will share these principles and join us as we transform our health system through health data.


Bill of Rights

RESOLVED that health data is vital to improving health and healthcare for all Americans. Accordingly, we declare:

  1. It shall be the obligation of institutions and data holders to protect every individual's right to privacy.
  2. It shall be the duty of institutions and the privilege of individuals to share health data when the greater good can be served.
  3. Health data shall be accurate, securely maintained, and made available in a manner which promotes productive use by others and respects the privacy interests of individuals.
  4. Institutions have the duty to provide patient identified information to individual patients upon request.
  5. Institutions have the duty to make public, in a responsible and timely manner, important insights and discoveries which improve health policy and our understanding of health and healthcare issues.
  6. Health data costs should not be a barrier to non-profits, foundations, government agencies, universities, researchers, and innovators who would use the information to maximize social benefit.
  7. Health organizations should be encouraged to utilize data to improve their products and services for members and consumers.
  8. Organizations shall be discouraged from limiting appropriate data access to others unless clear and tangible issues of patient privacy or competitiveness exist.
  9. Institutions and data holders should be transparent to data subjects and the public about their uses of health data to contribute to health research.
  10. Institutions shall strive to utilize best practices and standards in order to improve accessibility and portability of health data by and for patients.