GWEN IFILL: After years of debate, the Bush administration has announced new rules governing the privacy of medical records. The regulations, which take effect next spring, prevent the disclosure of medical information to employers without the patient's consent, and they allow patients to review their records and correct mistakes.
But some provisions have already stirred controversy. Health care providers would not have to obtain a patient's written consent to share information with hospitals or insurers. And although pharmacists would not be able to sell health information to a third party, they still could be paid to recommend drugs to their clients.
To examine the pros and cons of these new rules, we're joined by Janlori Goldman, director of the Health Privacy Project at Georgetown University; and Alan Mertz, executive vice president of the Health Care Leadership Council, an advocacy group for the health care industry.
Mr. Mertz, what did you see good in what the president has recommended?
ALAN MERTZ: Gwen, we think that these regulations give the patients what they want and what they expect. We think they expect that their medical information can and will be used by their doctor, their hospital, their pharmacist to provide them with treatment. For instance, if you go in to present your prescription to your pharmacy, you expect that information to be used to fill your prescription.
But they also want to be asked for permission before their information, their private medical information is used for other purposes, things that aren't connected with their treatment or payment of their bills -- things like marketing or information given to a banker making a loan or to their employer who might be making an employment decision or people generally using information for other purposes.
We think the regulation addresses that and would actually ask them to give their permission to use information or disclose it for those other purposes, other than the legitimate purposes of using information in health care -- whether it's by doctors or hospitals or others. And the regulation does provide, the first time it draws a circle around treatment and payment and other health quality uses of information. And if information is disclosed outside of that circle, there are penalties that will be imposed. And we think this is a very reasonable, workable rule that will keep that balance and keep the quality of health care.
GWEN IFILL: Ms. Goldman, is there anything these regulations don't accomplish?
JANLORI GOLDMAN: Well, I think the regulation is workable for the health care industry but it could have done a lot more to protect patient privacy. The Bush Administration eliminated the consent requirements that had been issued a number of years ago under President Clinton, and they have now made it easier to share medical information for marketing purposes. In fact, a chain drugstore can be paid by a drug company to share medical information without telling people that that's what's happening and without giving them any chance to limit the uses of their medical records for marketing purposes.
So, unfortunately, it really doesn't draw such a tight circle around medical records. And I think both doctors and patients have really lost control over some of the key sensitive medical information that should have been kept within the health care context and is now going to be shared for many other purposes.
GWEN IFILL: Since the health care industry and the privacy advocates both believe this is something that is long overdue in a general sense even though you may disagree with the details, what took so long for this to happen, Mr. Mertz?
ALAN MERTZ: Well, first of all, I want to say that we are privacy advocates, we represent institutions like the Mayo Clinic and doctors and hospitals and others. And we actually think that there is a workable compromise on this consent requirement; that unfortunately the rules of the old prior consent requirement would have really disrupted health care in fact for people trying to pick up a prescription for a relative or get a prescription renewed or a doctor to refer them to another specialist or maybe a hospital to schedule surgery the next day, that the earlier versions of the regulations might have actually disrupted care for patients and would have compromised health care. So it did take some time to make some of the adjustments in the regulations so they were workable for patients.
JANLORI GOLDMAN: You know, people sign forms every day when they go to the doctor, when they pick up prescriptions or they enroll in a health plan, they sign tons of forms and most of them are meaningless to them; they don't read them and they just sign. This was an opportunity that the Bush Administration really missed by eliminating the consent requirement because here was a form that could have been meaningful to the patients where they could have been asked how they want their information used and under what circumstances and it would have given an opportunity for doctors and patients to have a conversation about confidentiality concerns that the patients might have had that they may not raise now.
GWEN IFILL: If you're a patient and you're lying there feeling pretty poorly in bed and someone gives you a paper to sign and asks you to sign away or to guarantee your privacy, isn't that just one more piece of paper?
JANLORI GOLDMAN: It is one more piece of paper but I'd like to think it would be a little more meaningful than the waivers people sign now where they say I agree my information will be used for any purpose under any circumstances. That's what we sign now when we go to the doctor. I think of this form similar to the informed consent form that people sign before they have an operation or before they engage in a risky procedure or go into any kind of research, it informs them about the risks; it tells them what can happen.
They still have to sign it but hopefully it opens their eyes and educates them and it gives them an opportunity to ask their doctor questions and that's what this consent form should have done and now I'm concerned that people will be afraid to seek care, they'll be worried about how their medical information could be used against them and they may continue to withdraw from participation in their own health care. They might not even seek treatment.
ALAN MERTZ: I want to comment on that.
GWEN IFILL: I'll let you do that. I wanted her to complete her thought. What is wrong with what she was saying?
ALAN MERTZ: Well, actually I think the administration actually strengthened the consent requirements of the regulation because now it does for the first time require that when you go to see your doctor or go into the hospital, that you are given a complete notice of what your rights are, how the information can and cannot be used. And they are to get an acknowledgment from you that you received that notice.
The other misconception is that this doesn't require the patient's permission to use their information. In fact, for the first time, information, if it were to ever be disclosed for anything other than treatment or paying your claims, if it were to be sent to a newspaper or to your neighbor or for marketing products, it does require your permission before those activities can be done. But what they didn't want to do was restrict the flow of information between you and your pharmacist, you and your doctor.
GWEN IFILL: So, if I'm someone who is calling my doctor and saying would you phone me in a prescription please, do these regulations make that harder to do or does it affect it at all?
ALAN MERTZ: Well, it absolutely keeps that from being disrupted. Under the previous version of the regulation, the doctor would have called in the prescription to the pharmacy to refill the prescription, the pharmacist would have said, 'I'm sorry, before you can have this prescription filled for your elderly mother, your elderly mother is going to have to travel, come into the pharmacy, read a nine-page notice, sign it before we can even fill the prescription.' And that was the disruption that the administration was trying to avoid so the patients could have their prescriptions filled and other treatment activities fulfilled.
GWEN IFILL: You both alluded to the idea of marketing and protecting people from having their personal information used for marketing purposes. There was a widely reported case in Florida not long ago in which a Walgreen's Department Store worked with the manufacturer for Prozac to send free samples to people based on the fact that they had had prescriptions filled at their department stores. Is there anything in these new regulations, which would stop that from happening?
JANLORI GOLDMAN: Nothing. In fact, what's really terrifying to most people is that Walgreen's was making a available to the drug companies a list of people who had been diagnosed with depression and people who had been receiving antidepressants, and so when people went and had prescriptions filled at the drugstore, they didn't expect that a drug company could then come in, pay the chain drugstore to share that information and make it available so they could target market them.
Marketing in the drug industry is a huge business right now and in fact it is one of the biggest expenditures in the health care field but most people don't have any idea that if they receive a letter from a chain drugstore, maybe it's really being paid for by a drug company. So what the Clinton regulation would have done is at least require the chain drugstore to inform people if that mailing had been paid for by a drug company and give them the chance to say I don't want to get it. It is different than if they had gotten that communication from their doctor or if their doctor had said I want to recommend a different treatment or maybe switch drugs.
GWEN IFILL: In your reading of the 400 pages of these documents, do you have a different interpretation?
ALAN MERTZ: It was a long weekend reading the regulations. But let me just say first of all, the regulations make it very clear that a pharmaceutical company absolutely may not buy a list of patients and a provider, a pharmacist, a hospital, a doctor; they are absolutely forbidden from giving lists of identifiable information and selling it to a pharmaceutical company. That is prohibited without the specific prior authorization of the patient. And we very much support that rule.
Let me talk just for a second though-- there are some activities in President Clinton's version of the rule that I think we all agree got inadvertently swept up in something called marketing. For instance, my own parents might be on a Coumadin, a blood thinner or a heart medication. Their pharmacy may realize that they didn't come in to pick up their refill or they might be taking another drug that in combination with that, they've noticed, oh, they bought a prescription that if they take those two drugs together, it could be life threatening.
This allows the pharmacy -- just the pharmacy -- to send a notice to that person to remind them that they have a refill that might be necessary for them to take the lifesaving medicine. The information does not...
JANLORI GOLDMAN: Wouldn't people prefer to hear from their doctor? Wouldn't people prefer to hear from their doctor that they should refill their prescription? Maybe the person stopped taking that drug. Maybe they shouldn't be refilling their prescription. Maybe that's not really the communication they should be getting. And I think it is a fine legal point to suggest that just because the chain drugstore can't sell the information to the drug company, the drug company can pay the chain drugstore to send them material.
ALAN MERTZ: First of all, this erects a wall between the pharmacy, the health care provider and the pharmaceutical-- there can be no exchange of information. It is not going there. I believe that when a doctor-- we want to make sure the doctor can communicate with the patient about maybe there's a new drug that has come along that's better than the one they were taking. They want to be contacted. That happened to my own mother with her medicine for osteoporosis. So we want to make sure that those communications about health-related products can continue or about a drug interaction that's about to happen.
GWEN IFILL: Let me ask to you flip-flop on this privacy issue, which is there was a case in Iowa where the body of a dead baby was found and they were trying to identify this baby. And in order to do that, what authorities did was they went to all the hospitals and clinics in the area and asked for them to give up the information of anyone who had tested positive for pregnancy within a certain time window to try to identify the mother of this infant. Now was that a violation of privacy that these rules would do anything to control?
JANLORI GOLDMAN: Well in fact Planned Parenthood has resisted that subpoena from law enforcement in Iowa because they say this pregnant woman could have lived anywhere and their records are extremely confidential and if it is going to keep people from going in to get care and to go to the doctor and to get reproductive services, that is going to be a major problem.
GWEN IFILL: Does it stop investigators from getting to the bottom of a crime?
JANLORI GOLDMAN: Absolutely not. In fact, the regulation does allow law enforcement to get access to medical records but with some rules in place and with some standards in place.
ALAN MERTZ: This is one area where -- there are many areas in the regulation that we agree. And this is one actually where we were pushing for much tougher restrictions on where law enforcement personnel could get a hold of medical information. We agree with Janlori on that.
GWEN IFILL: Okay. One final question, which is if you absolutely positively don't want any of your information made public to anyone, you want to pay all of your doctors cash money so it is not communicated to your insurance company, any of that, is it possible to do that under these laws?
ALAN MERTZ: Yes, yes it is. In fact you could self-pay. Even if you don't pay for it yourself, the regulations do allow, if you want to put a restriction on who your information goes to or who it is released to, the regulations allow to you sit down with your doctor or your pharmacist and say I don't want this particular person to get my record.
JANLORI GOLDMAN: You know, HHS says if people don't like what their pharmacies are doing, if people don't like how their privacy is being protected, they can just go elsewhere. And I think that's a terrible answer for the American public. Privacy should be built into the health care system and people should haven't to choose between their privacy and getting good care.
GWEN IFILL: Okay. Janlori Goldman and Alan Mertz, thank you both for joining us.
ALAN MERTZ: Thank you.
JANLORI GOLDMAN: Thank you.