Senate Committee on Labor and Human Resources Hearing On Medical Information Privacy Legislation

Senate Committee on Labor and Human Resources Hearing On Medical Information Privacy Legislation

February 26, 1998

Mr Chairman, I appreciate the priority that this committee is making of moving forward to address what I believe to be one of the most important privacy issues facing us today – the privacy of our medical records.

The most recent wake-up call to Congress on the need for passing a federal medical privacy law were the Washington Post articles last week about the customer tracking and marketing uses of personal prescription information by CVS and Giant pharmacies.

These revelations clearly touched a nerve with the public.

CVS and Giant are certainly not alone in this practice. Right now there is widespread dissemination of information throughout the health care system – often without explicit patient authorization.

Health care providers, payers, pharmaceutical benefits managers, managed care companies, HMOs, drug companies, and hospitals all collect prodigious amounts of patient-identifiable information.

According to one estimate, the health care industry spent as much as $15 billion in 1996 alone on information technology to acquire and exchange vast amounts of medical information about Americans.

This collection of information can be useful for quality assurance and to provide more cost-effective health care.

The problem is that few, if any, controls exist to ensure that medical information about individuals is not used for other purposes which may not truly be in a patient's interest or ensure the patient's privacy.

The clock is ticking, and the self-imposed deadline for dealing with medical privacy questions that Congress enacted with the Kassebaum-Kennedy bill is approaching.

Mr. Chairman, I commend you for the hearings you have convened to set the stage for this debate. I see today's hearing, in particular, as a sign that Congress may at last be ready to move the medical privacy issue to the front burner.

I am encouraged that a variety of public policy and health professional organizations, across the political spectrum, are signaling their intentions to step forward to join forces with consumers during this debate.

And I am encourage by the draft bill being worked on by you, Mr. Chairman, and Senator Bennett. Senator Bennett and I were allies in an earlier stage of this process.

And I hope that we can now work together on legislation to provide a strong and workable federal medical privacy law.

As you know, Senator Kennedy and I have introduced, S. 1368, the Medical Information Privacy and Security Act (MIPSA).

It would close the existing gaps in federal privacy law to protect the privacy of medical records.

A guiding principle I have applied in drafting this legislation is that the movement to more a integrated system of health care in our country applying the advantages of our new technologies, will only continue to be supported by the American people if they are assured that the personal privacy of their health care information is protected.

In fact, without the confidence that one's personal privacy will be protected, many will be discouraged from seeking medical help.

I will provide a more comprehensive summary of S. 1368 for the record, but for now I will briefly outline what our bill does:

MIPSA is broad in scope -- it applies to medical records in whatever form--paper or electronic. It applies to each release of medical information -- including re-releases.
It comprehensively covers entities other than just health care providers and payers, such as marketers and others that may have access to sensitive personal health data.
It gives individuals the right to inspect, copy and supplement their protected health information.
It allows individuals to segregate portions of their medical records from broad viewing by individuals who are not directly involved in their care.
It establishes criminal and civil penalties that can be invoked if individually identifiable health information is knowingly or negligently misused.
It sets up a national office of health information privacy to aid consumers in learning about their rights and how they may seek recourse for violations of their rights.
It creates a set of rules and norms to govern the disclosure of personal health information and narrows the sharing of personal details within the health care system to the minimum necessary to provide care, allow for payment and to facilitate effective oversight. Special attention is paid to situations such as emergency medical care and public health requirements.
We have tried to accommodate legitimate oversight concerns so that we do not create unnecessary impediments to health care fraud investigations.
It extends to all research facilities using personally identifiable information the current requirements met by federally funded researchers.
It does not preempt state laws that are more protective of privacy.
It prohibits law enforcement agents from searching through medical records without a warrant.
It does not limit law enforcement agents to gain information while in hot pursuit of a suspect.

For the American public, and for the Congress, this debate boils down to a fundamental question: Who controls our medical records, and how freely can others use them?

All of us are health care consumers -- every individual and every American family.

As Congress works toward answering this question, the privacy interests of the American public will be at odds with powerful economic interests and with the penchant by large organizations and complex systems to control this kind of personal information.

Well-funded and sharply focused special interests often win in a match-up like this.

As policy makers, we must remember that the right to privacy is one of our most cherished freedoms -- it is the right to be left alone and to choose what we will reveal of ourselves and what we will keep from others. Privacy is not a partisan issue and should not be made a political issue.

It is too important.

Please select a destination: