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January 21, 2009
The Honorable Henry Waxman
Chairman, Committee on Energy and Commerce
United States House of Representatives
The Honorable Joe Barton
Committee on Energy and Commerce
United States House of Representatives
Dear Chairman Waxman and Ranking Member Barton:
We are writing in strong support of the provisions in the economic recovery legislation to advance
the adoption and use of private and secure health information technology (HIT). As members of the
Consumer Partnership for e-Health, a non-partisan group of consumer, labor, and patient
organizations representing over 127 million people, we believe that HIT and Health Information
Exchange (HIE) are critical to health care reform. Seizing opportunities that will both stimulate our
economy and establish a critical infrastructure for health information exchange, including strong
baseline privacy and security protections, is a vital step forward.
The proposed legislation takes very positive steps toward advancing the adoption of HIT in ways
that will improve patient care and health outcomes. In addition, it makes critical improvements to
federal privacy and security law to guard against inappropriate uses and disclosures of patients’
health information. We believe that there are three significant ways that this bill advances the goal
of using technology to increase health care quality:
• Targets
spending wisely so that incentives for HIT adoption and use are tied to advancing
higher quality, more efficient patient care;
• Establishes a foundation of privacy and security protections that will help consumers trust
that their personal information will not be inappropriately shared or used;
• Ensures that governance of existing and emerging federal exchange initiatives, as well as
the adoption of standards and certification criteria, is transparent and responsive to the
public interest.
In particular, we strongly support the bill’s provisions to:
Advance Better Quality, More Efficient Care
• Provide $20
billion in federal financing to build a strong HIT infrastructure and give providers
necessary incentives to adopt and use HIT to electronically exchange patients’ health information;
• Tie federal financial incentives for HIT to meaningful improvements in quality of care, care
coordination, and reductions in medical errors and duplicative care;
• Provide incentives through both the Medicare and Medicaid programs that are targeted, timelimited and coupled with eventual penalties for non-adoption. This type of “carrot-and-stick”
approach is essential to achieving cost-effective, widespread adoption.
• Establish a health information technology extension program under HHS to assist providers with
practice redesign, which is essential to ensuring that HIT is effectively implemented and used over
time;
• Fund
the sharing of “best practices” in HIT policy and implementation among states and local
communities to leverage the considerable knowledge and expertise that currently exists among
early adopters;
• Integrate HIT-relevant curricula into clinical education to address the workforce needs critical to
the long-term effective use of HIT/HIE;
• Foster active engagement of patients in their health and health care management by giving them
the right to obtain electronic copies of their medical records, with limits on cost, and encouraging
the development of programs that provide assistance to patients in utilizing HIT.
Improve Privacy and Security
• Create a position
of Chief Privacy Officer within the Office of the National Coordinator for HIT
(ONCHIT) to advise the National Coordinator on privacy, security, and data stewardship issues,
and to help coordinate federal and state privacy and security policies;
• Apply the HIPAA privacy and security provisions and penalties to business associates of covered
entities to ensure accountability for all who have access to personal health information;
• Require that individuals [or patients] be notified when their personal health information is
breached;
• Require an audit trail showing all disclosures of health information made through an electronic
record. This provision is essential for ensuring consumer confidence and accountability for the use
and disclosure of health information;
• Prohibit the sale of an individual’s health information without their authorization;
• Require that providers attain authorization from a patient in order to use their health information
for marketing and fundraising activities;
• Provide authority and resources for better enforcement of federal privacy and security protections
by:
o Increasing enforcement and penalties for violations and providing greater funding for
federal enforcement and oversight of the uses and disclosures of health information;
o Ensuring coordination with and involvement of the Federal Trade Commission to
better enable non-health care entities to be held accountable for inappropriate uses
and disclosures of personal health information
• Require a long-overdue review of HIPAA’s definition of “health care operations” and a
determination of whether some of these activities should require express patient consent or could
be adequately conducted with de-identified information;
• Establish Regional Office privacy advisors to provide much needed education and guidance to both
consumers and providers.
Strengthen Federal Leadership and Governance
• Codify ONCHIT to provide better oversight, coordination, and evaluation of federal initiatives;
• Create publicly accountable and transparent policy and standards advisory committees to help
establish a strong framework for a nationwide health information technology infrastructure;
• Require that the National Coordinator consider the recommendations of the National Committee on
Vital and Health Statistics. This body has consistently put forward practical and consumer-focused
recommendations to guide the development and implementation of a nationwide HIT/HIE
infrastructure;
• Provide financial assistance to consumer advocacy groups and not-for-profit entities that work in
the public interest on the HIT Standards Committee;
• Make health
information technology more affordable by providing, for a nominal fee, an electronic
health record to health care providers, unless the Secretary determines that their needs are being
substantially and adequately met by the marketplace.
While the bill will help address quality issues for many populations, including underserved groups,
we hope you will consider adding language that will directly tackle the problem of health disparities.
It is critical that qualified electronic systems be required to collect demographic information that
includes race, ethnicity, language, and gender, and that any reporting of clinical quality measures be
stratified by those data elements. This information is essential for patient-centered and population
based approaches that will decrease disparities in care.
We look forward to working with you to advance this legislation. Thank you for your leadership and
commitment to achieving a modern, high performing health care system that enhances patient care
and engenders consumers’ trust.
Sincerely,
Members of the Consumer Partnership for eHealth
AARP
AFL-CIO
AFSCME
Center for Democracy and Technology
Center for Information Therapy
Children and Adults with Attention-Deficit/Hyperactivity Disorder
The Children’s Partnership
Consumers Union
Health Care For All
National Association of People with AIDS
National Committee to Preserve Social Security and Medicare
National Partnership for Women & Families
SEIU