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Document 49 of 261.

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June 14, 2000, Wednesday

SECTION: PREPARED TESTIMONY

LENGTH: 1782 words

HEADLINE: PREPARED TESTIMONY OF A.G. BREITENSTEIN, JD, MPH CHIEF PRIVACY OFFICER CHOOSINGHEALTH.COM

BEFORE THE HOUSE COMMITTEE ON BANKING AND FINANCIAL SERVICES

SUBJECT - REGARDING H.R. 4585

BODY:
Good morning, Chairman Leach and members of the committee. Thank you for inviting me here to testify before you on this very important issue of the privacy of personal health information.

Let me introduce myself. My name is A.G. Breitenstein. I am the Chief Privacy Officer of a young Internet startup company known as "ChoosingHealth.com." ChoosingHealth is the first Internet service of its kind to allow patients to communicate with other patients and with researchers, hospitals, doctors, pharmaceutical companies and other health industry vendors without having to give up their privacy. We are dedicated to the notion that a patient's health information belongs to them and is one of the most valuable resources that exists in our burgeoning information age.

I particularly want to thank you for taking up this very important and very challenging issue. A Wall Street Journal Poll recently found that Americans consider the issue of health privacy to be more threatening than domestic terrorism. A 1999 Harris Poll found that Privacy was the number one reason why individuals are choosing to stay off of the Internet. And as we have seen to date, few legislative or regulatory solutions have succeeded in properly addressing this issue. But the urgency of this problem is clear. In the discussions that I have had with health care practitioners, the current lack of patient confidentiality has already had a profound impact on the way in which they practice medicine. Dr. Nancy Dickey, past President of the AMA, has stated that "these days insurance companies don't want summaries; they want the whole record. So I think twice about what I include. Then I hope that I can remember it all...If my patients fear that what they tell me could comeback to haunt them, they'll tend to be less forthright. I may come up with the wrong treatment because I was chasing the wrong clues."

Dr. Dickey is not alone. I once spoke with one physician who reported to me that his wife, also a doctor, routinely "doodled" in the margins of her medical records. And that her doodles were, in fact, coded messages to herself regarding her patient's medical histories. She felt the need to protect this information because these records are routinely sent to insurance companies and often accessible to employers and others. She was rightly concerned, however, that the care of her patient might be compromised if anything happened to her and no one was able to decipher her doodles.

This dramatic loss of privacy has been made worse by the increasing demands of the "health care system" for information that was previously held within the one-on-one doctor-patient relationship. As Dr. Ricardo Lewitus a pediatrician has stated:

Insurance companies are requesting us as part of 'well visits' to ask and document (which I have no problem with) questions such as: Do you have sex? Do you masturbate? How are your relationships with your parents, friends? Have you had an abortion? And many others. As I said, I have no problem asking these questions. What disturbs me is the access that insurance companies have to that information and therefore anybody else that wants or can legally obtain those records. We physicians are in a Catch 22. If we document, patient confidentiality can be destroyed; if we do not document then we are classified as 'bad doctors.' As a pediatrician, I am very concerned about how information available to third parties will affect these children's futures.

These stories show us that patients are being forced into an awful choice between their health and their privacy. For many, especially those with HIV, mental illness, genetic disorders, etc, this choice can be gut wrenching and destructive. Your efforts here in legislating this issue will have a profound impact on the integrity and effectiveness of the health care system as well as the personal integrity of each and every one of us. I am here before you today to support you in your efforts to protect this valuable and common resource we now know as our health privacy. The proposed legislation is a good first step. I would like to commend you for tackling this issue and to make a few suggestions for improvement. I am also here to give you some sense of how your efforts in this effort are going to shape the future of health privacy, health care and the wider realm of personal identity in the new economy.

If there is one thought that I would like you to take away from my testimony today, it is this one: Personal information, particularly health information, is the new cash in the digital age. Your efforts to protect the privacy of personal health information will set the terms that will allow individuals to negotiate on a level playing field for the value of this new currency. Without adequate protections individuals will be robbed of a valuable resource and will be reluctant to purchase the goods and services they need.

What do I mean by this statement? It will help to make a few observations.

1) When people get stuff for "free" in our new digital economy, they are generally paying for things by giving up some amount of personal information. This is particularly true on the Internet. E-commerce sites have learned quickly that they can offer "free" goods and services by collecting vast amounts of personal information like buying habits, profiled interests, etc, and selling them to others. Most websites have either as their primary or secondary source of revenue, some plan to sell personal information. In this way, our personal information is used as a stand-in for cash.

2) Personal health information is the most valuable of all of the various categories of information, followed closely by one's financial information. As such, health and financial information are the most valuable of all the bits of personal data that can be collected. They are also the hardest to acquire. If, for instance, a bank has data from the purchase of an inhaler for my asthma, the fact that I have asthma is significantly more valuable than the $10 transaction involving the inhaler. If I, as a bank, can collect and sell a list of people who have asthma to an unscrupulous researcher or a direct marketer I can make millions of dollars. Similarly, information regarding my breast cancer diagnosis can be incredibly valuable with regard to my credit worthiness for a home mortgage.

How should these observations affect your work on HR 4585? Let me suggest the following. Privacy legislation will be the backdrop against which the emerging digital economy will be set. It will have a profound influence on the ability and right of consumers to negotiate the value of their personal information in exchange for those goods and services they desire. You are, in effect, creating a new currency of sorts. This is a very subtle, but very radical idea. Your efforts here must incorporate this fact and be vigilant in the protection of personal health and financial privacy. Let me make a few suggestions and observations: 1) The basic rule of consent must be clear and unambiguous with few exceptions and full information. Consent establishes the right of the individual not to be robbed of their personal data. If we are venturing into a new information age, we must protect the ability of the individual to protect his/her resources in this realm.

2) Health information collected for one purpose cannot be used for another purpose without consent. If I use a debit card to purchase an asthma inhaler, I have done so for the limited purpose of paying for the inhaler. Any other uses that I do not consent to rob me of the value of this personal information. Think of it as a stock certificate that I place in a safe deposit box. Just because I place that information in the bank's custody does not allow that bank to treat it as its own. Secondary uses of that information without my consent should be prohibited, particularly when those secondary uses could affect my access to things like access mortgages, loans etc.

3) As the banking and insurance functions begin to merge it is going to be exceedingly important to build a fire-wall between these two areas. People should not be forced by virtue of the privileges we as a society have granted corporations to choose between their health and their ability to own a home or a car. If the insurance side of a business is aware that I have been diagnosed with breast cancer, the banking side should not then be allowed to bar my ability to get a home mortgage.

4) Individuals must have a private right of action to enforce their claims on their personal health information. Data is property. If there is one thing we have historically protected in this country, it is the right of an individual to protect his/her property. The failure to do so here will not only adversely affect health care, but will also set a dangerous precedent in the new information era. You will make individuals into helpless dependents upon the state for protection of one of the most valuable resources in our new economy. I cannot stress how pernicious this will be to our fledgling Internet economy.

Let me close by saying this. Many of my esteemed colleagues will testify today that privacy protections are going to drive up costs and stifle economic growth. I want to challenge their argument head on. Personal information is a resource. It has value and as our economy shifts to an information based system, it will become one of the most valuable resources in the world. If we rob individuals of their data, we render them penniless and powerless to participate freely and fairly in a new free market. We will first feel this in rising health care costs owing to an eroded doctor-patient relationship. We will then feel the effects when people offer erroneous information or worse choose not to participate at all. We are already seeing evidence that this is occurring. A 1999 Consumers League study found that 70% of people were unwilling or reluctant to divulge personal or financial information on-line. A 2000 CyberDialogue poll found that 40% of women who have never made a purchase online cited privacy, security and a lack of regulation as the major barriers. Without adequate privacy protections, we will stifle this exciting new driver of our economic growth. I urge you to make this bill as strong as possible and to give the people of this country the right to control the data that is a reflection of their most intimate selves and that will represent them in the new digital economy.

Thank you for your time today. I look forward to working with you on this important legislation and would be happy to offer any help I can.

END

LOAD-DATE: June 15, 2000

Document 49 of 261.


Search Terms: personal w/5 information w/5 privacy, House or Senate or Joint
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