Consumer Proposals for HIT Legislation 

An interoperable system of electronic health information holds many potential benefits for consumers – including better coordination of care, higher quality and more efficient care, increased system transparency, and patient access to information about providers – but also raises serious concerns among consumers about personal privacy, data security, and the potential misuse of their information. 

The promise of an interoperable system to improve quality, reduce errors, and contain costs relies on the willingness of consumers to accept the technology.  But nearly three years after the creation of the Office of the National Coordinator, and more than a year after creation of the AHIC, health information technology is being developed and adopted without any meaningful policy framework. 

There must be a clear, deliberate process and open forum for addressing and setting matters of policy before a health information architecture is in place.  To serve this need, the AHIC should be elevated to become a bipartisan policy-setting body, with independence and authority distinct from the Department of Health and Human Services.  The Office of the National Coordinator should focus on implementing AHIC’s policy framework through the development of a workplan for adoption and use of interoperable systems of health information exchange, including the award and oversight of grants and contracts.   

American Health Information Collaborative: A New Approach 

• Congress should create a federal HIT policy commission (the “Collaborative”) to replace AHIC.  The Collaborative should be elevated, with appointments made by Members of Congress and the Comptroller General to ensure bi-partisanship and independence from the Department of Human Services.
• The Collaborative should be charged with developing a coherent policy framework for the adoption of HIT on a national basis, and across government agencies.  Congress should ensure the framework takes into account consumers’ privacy and security concerns.  This includes:
  • Protection of individually identifiable health information (taking into account advances in genetic information and personalized healthcare and how they may alter patients’ views on privacy).
  • Security of information, including guidance on appropriate processes for providers in the case of a breach of patients’ health information.
  • Patients’ ability to access and control their own health information.
• Duties of the Collaborative should include:
  • Producing an annual strategic plan for the President and Congress (and released via the Internet).  The purpose of the plan would be to guide both public and private HIT efforts.
  • Analyze and advise on how the NHIN should enable positive secondary uses (such as collection of quality data and public reporting; biosurveillance and public health; medical research; and drug safety), while ensuring that inappropriate and/or unauthorized secondary uses are prohibited.
  • Conduct a study on how to translate benefits of the VA’s HIT system to national HIT efforts.
• Funding for the Collaborative should be at least $5 million/year.

Office of the National Coordinator (ONC) 

Congress should require ONC to give due consideration to the policy recommendations devised by the Collaborative. 

Funding 

• Congress should increase the authorized level of funding for grants to providers.
• Congress should limit the eligible recipients of grants to those providers that serve medically underserved communities and patients at risk for health care disparities.
• Congress should impose eligibility criteria on recipients of grants to require that they implement quality measures and report them to the Secretary of HHS.
• Congress should consider options for payment incentives in federal health programs to encourage the adoption and use of interoperable HIT that is consistent with federal standards.

Quality Measures 

Consistent with provisions in the Senate-passed “Wired for Healthcare Quality Act”, Congress should require the Secretary to develop quality measures to assess the effectiveness, timeliness, patient self-management, patient centeredness, efficiency, and safety, for the purpose of measuring the quality of care patients receive.  In addition, Congress should require that the comparative quality information collected by HHS be made available to the public at the individual provider level.