June 7, 2006
The Honorable Nathan Deal
Chairman
Subcommittee on Health
Committee on Energy and Commerce
United States House of Representatives
Washington, D.C. 20515
The Honorable Sherrod Brown
Ranking Member
Subcommittee on Health
Committee on Energy and Commerce
United States House of Representatives
Washington, D.C. 20515
Dear Chairman Deal and Ranking Member Brown:
As organizations representing consumers, we are writing to comment on the consideration of H.R. 4157 in the Energy and Commerce Committee.
First, we are pleased that the substitute bill under consideration has deleted what we considered a harmful provision that would lead to the preemption of stronger state medical records privacy laws. Recent surveys document that fear of privacy breach causes patients to withhold information from their physicians, and recent breaches of personal health information have raised concerns by the public even more. That is why we believe health information technology legislation should be consistent with consumer principles that are supported by 20 consumer and labor organizations. We have attached a copy of these principles, which include:
• Individuals should have control over whether and how their personally identifiable health information is shared, including the ability to opt out of having it shared – in whole or in part – across an electronic health information network.
• Individuals should be notified if their health information has been subject to a privacy violation or breach.
• Tracking and audit trail systems should be in place that permit individuals to review which entities have entered, accessed, modified and/or transmitted any of their personally identifiable health information.
• Meaningful legal and financial remedies should exist to address any security breaches or privacy violations.
We understand that Representative Capps will offer an amendment that will strengthen privacy protections and address a number of our principles during the consideration of H.R. 4157. We agree that patient privacy and security concerns must be addressed upfront as the nation moves closer to an interoperable system for sharing medical information.
Second, we remain concerned that H.R. 4157 would weaken the nation’s anti-fraud laws by allowing the donation of health information technology (HIT) which may or may not be compatible with the national HIT standards being developed. We believe it is premature to grant new statutory exemptions from the physician self-referral and anti-kickback laws for this purpose. The drive to promote the wider use of electronic information exchange capability should not trump the consumer protection and program integrity brought by these antifraud and abuse prohibitions. Of much greater importance in encouraging more health information technology adoption are the grant programs authorized under S. 1418 and the standards harmonization and product certification initiatives the Department of Health and Human Services already has underway. The standards need to be in place to ensure that donated technology will enhance, not impede, reaching the goal of a common platform for information exchange.
Any relaxation of these important safeguards would also, in our judgment, tend to favor those physicians with large practices, or well-insured caseloads, or those likely to be high users of a particular service or technology. The community clinics and the solo practitioners in rural communities or medically underserved areas – the providers that are least likely to have the resources to make health information technology investments on their own – would probably not benefit greatly.
We understand that S.1418 will be offered as a substitute. The Senate bill, which passed unanimously on November 18, 2005, would provide modest federal matching health information technology assistance grants to providers demonstrating significant financial need. Grantees would have to agree to use technology that was compliant with federal interoperability standards. The bill does not include any exemption to the self-referral and anti-kickback laws. We believe S. 1418 is the preferable approach to encouraging the widespread adoption of interoperable health information technology.
Thank you for your consideration of our comments.
AFL-CIO
AFSCME
Consumers Union
Healthcare For All
National Consumers League
National Partnership for Women & Families
SEIU
View the Consumer Principles