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Increasing Privacy Protection and Reducing Research Impediments (HIPAA)

CHALLENGE:  In 2009, an Institute of Medicine (IOM) report concluded that the HIPAA Privacy Rule does not adequately protect patient privacy and that it significantly impedes research.

  Change the HIPAA Privacy Rule and related research and health data policies through advocacy and education efforts to strengthen patient privacy protection and accelerate cancer research.

PROGRESS: In January 2013, the Department of Health and Human Services (HHS) published a Final Rule modifying the current HIPAA Privacy, Security, Enforcement and Breach Notification Rules in accordance with the Health Information Technology for Economic and Clinical Health Act and the Genetic Information Nondiscrimination Act. In several places, language in this major Rule is consistent with repeated C-Change comments to HHS.

C-Change analysis of the January 2013 Final Rule links: 

The Path Forward:

This Advisory Committee outlined a revised C-Change strategy for this initiative that includes the following:

  • Educate C-Change members and partners about the Final Rule and how it relates to C-Change objectives
  • Develop and promote common language and standards for consent forms, including their use
  • Monitor implementation of research related components of the new rule to assess if the changes lead to the intended positive impact on clinical and research outcomes and ascertain problems in implementation as they arise

For now, C-Change will not continue advocacy for an opt-out strategy of consent, changes to de-identification standards, or federal preemption of state privacy laws related to health data, all of which were not addressed in the Final Rule. C-Change will re-assess the decision to advocate for these issues in the future if necessary.     

C-Change Progress in HIPAA: A Webinar           

Take Action:

Contact C-Change staff if you are interested in collaborating with the C-Change Advisory Committee to advance the above strategy.                 






Advisory Committee Co-chairs:
Stanley W. Crosley, JD
Roy A. Jensen, MD

Advisory Committee List

C-Change Report

C-Change Comments to HHS

Other Reports

C-Change‚Äôs success is made possible by the commitment of our members, funding of our donors, and dedication of our staff, for which we are deeply grateful.  Funding for the 2012 HIPAA Initiative comes from individuals, the American Cancer Society, Hogan Lovells (pro bono), Robert Wood Johnson Foundation, and State Farm Insurance Companies. (Updated 5/15/12)