PRIVACY FOR PATIENTS
December 20, 2000

After a background report, health policy experts discuss the new federal rules for medical privacy. The Health Unit is a partnership with the Henry J. Kaiser Family Foundation.

 

A Health Spotlight Report: Patients' Bill of Rights Nov. 1, 1999: The president's privacy proposal. Oct. 29, 1999: President Clinton proposes increased privacy for patients. The NewsHour's Health Spotlight. Browse the NewsHour's coverage of Health     Health Privacy Project Health Insurance Association of America White House	RAY SUAREZ: Joining me now, Janlori Goldman, director of the Health Privacy Project at Georgetown University; and Chip Kahn, president of the Health Insurance Association of America, which represents 295 health insurers and plans. Well, Chip Kahn, what do you make of the new regulations? CHIP KAHN: Well, we believe that Americans need to have their medical records protected, patients and consumers need to be able to trust that no one is going to misuse their records. However in this case, we think that the regs as they came out today really don't do the job. We need legislation that will uniformly cover the country so that we won't end up having 52 rules -- the problem now is that you got these rules. And in the states they can pass rules, many have. We are concerned that the complexity and the cost here will be too great and we want to see legislation; the regs don't do it. We are a little unhappy that they chose to have these regs issued sort of at the 11th hour. We are entering a new Congress. There are opportunities in the upcoming year to legislate on this matter. And that is what we want to see. RAY SUAREZ: Well, if those regulations can be harmonized, taking care of that concern, are you at peace with what is in them, what they are asking people in the information chain to do? CHIP KAHN: Well, if you get in the weeds, there are problems with these regs. For example, they affect all records, but they don't affect all kinds of users. Only insurers and health plans and doctors and hospitals are basically subject to the law. However, others use the materials and the documents, and in a sense we are asked by the way the regulation works to be the policeman to assure that those people don't misuse the regs or don't misuse the documents or the records. That is a tall order for us. We feel strongly there ought to be legislation that affects all entities that ever touch the documents and their medical records so they won't be misused. RAY SUAREZ: Janlori Goldman, what is your reaction to today's new rules? JANLORI GOLDMAN: Today's regulations are a major victory for consumers. They have the most sweeping privacy rules the United States has ever seen.
	Unequal level of responsibility?
	RAY SUAREZ: Well, why don't you respond to some of Chip Kahn's problems and criticisms -- how about the fact that there are other people in the chain who aren't, let's say, as burdened by these rules as others, giving sort of an unequal level of responsibility? JANLORI GOLDMAN: Right now responsible hospitals and health plans should have privacy rules in place, and they should be responsible for the actions of their employees and their contractors, and anyone to whom they give information. They shouldn't just be giving out information and then saying we are now not liable. The administration had its hand tied by Congress in how far it could go in this regulation. And, in fact, these regulations were mandated by law by a Congress in 1996, a Republican Congress, that said you must issue health privacy regulations. So it's not being done at the last minute; it was being done after public comment -- 50,000 comments from industry and consumers groups -- lots of hard work trying to make it a strong privacy law but also workable for the healthcare industry, and I think it has done that. CHIP KAHN: I was there. I was one of the people that drafted this legislation; I worked on Capitol Hill back in 1996. And it was our hope and plan that the Congress would act and actually do a law here. We really never anticipated that had it would come to no action over two years and that ultimately you get regulations. We were there now -- there are regulations - but I think looking to next year, looking to the new administration, looking to a Congress that is going to be seeking to accomplish things, to act in a bipartisan fashion, I think it's time to have this legislated and the regulations are important. And we -- consumers need protection. Patients need protection. I agree that something needs to be done. But we need a uniform congressional action that affects everyone, that affects all uses of the records. We don't have that here. RAY SUAREZ: Well, these new regulations have been called sweeping, they've been called, you know, comprehensive. What do they change about your life as a patient? Will you notice the difference, Janlori Goldman? JANLORI GOLDMAN: Absolutely. Right now there is no federal law that protects the privacy of medical records. We have a total vacuum in this area. And so it was absolutely the right thing for the administration to step in and say, we need to give people privacy rights in their medical records. The health care world is changing so quickly. People are afraid to get genetic tests; they're afraid to use the Internet. They cannot take advantage of these tremendous breakthroughs in technology and in science. And so now with this new law they will get a copy of their own medical record. They can limit disclosures of their information. They can make sure that law enforcement has to get processed before they can get access to medical records. It will really put some critically needed rules in place so people will not be afraid when they go to the doctor or fill a prescription or enroll in a health plan, that their information will be used against them; that they will be fired from a job or that they might lose benefits. They should not have to worry when they go to the doctor and they engage in just fundamental healthcare activities that that information will be used against them, and this rule gives them some protections. RAY SUAREZ: But are there at this very moment people trading information about an individual's healthcare where they will now be aware that they are being asked, here, before I give this to somebody I have to get to you sign off it? Talk about consent and how that will change the way you get treatment.
	A difference in people's lives
	JANLORI GOLDMAN: Absolutely. This rule will make a difference in people's lives. It will tell people how their information is used. It will give them a chance to talk with their doctor and to say I want to limit how this information is used. It will keep hospitals and health plans and doctors from giving information to employers. This is one of the most fundamental protections in this law. And I would think the health plans and the health care providers would support it. They will now be able to say to all employers we cannot give you any information on your employees or your job applicants; we cannot give you this information. You cannot use it to discriminate. And that is a critical protection. RAY SUAREZ: Chip Kahn, are there downsides that the public should be aware of in implementing these things? Are there going to be costs involved? Are there going to be bureaucratic bottlenecks? CHIP KAHN: Well, first, over the last few years, the insurers and health plans and providers, hospitals and doctors have been really been very successful with learning how to manage care in many ways. There is a great deal of transfer of information in terms of managing care - to provide the right drugs, to make sure people take their drugs -- to make sure people are receiving other kinds of services they need. It is our concern that the way the process works in these regulations -- that that may place a chilling effect on what health plans are willing to take chances on doing in terms of the transfer of information for the purposes of healthcare. Now I can't debate and I agree completely that medical information should not be used against people in any circumstances. But there are many ways that quality of care can be improved by the transfer of information or research. RAY SUAREZ: Can you give me an example? CHIP KAHN: Well, we are just concerned that whether a health plan provides pharmacy coverage and doctor coverage, whether there are certain circumstances now where there will be reluctance to share the information between the pharmacy and the physicians because of sort of the line of consent and the paperwork that will have to be done. That is just one example. I think that you can write rules that will work in this area. We are concerned that the regulation the way it works will impede, place a chilling effect on the good things we can do in terms of positive managing care, helping patients get better quality services. That is one issue. And I think, too, this issue that I mentioned before of health plans and insurers and doctors and hospitals having to worry about people they contract with, sure, we have a responsibility first to protect the information we have. And then we have a responsibility for our contractors. But the way the regulation works, we ultimately will be the policeman and we can be punished in ways that I think are overly severe if there are problems with a contractor. We would rather see a law that universally affects everyone who deals with the information so that Health and Human Services, the Justice Department, whoever needs to come in, can deal with those contractors if they misuse information.
	Allow information to flow
	JANLORI GOLDMAN: Chip, there is nothing in these regulations that keep doctors and health plans from using information to treat people and to pay for their care. In fact, the regulations allow information to flow to treat people and pay for their care and to do quality analysis. There is nothing in here that would do that. And the cost issue is really something that I think the industry is using as a red herring. There will actually be cost savings from the total implementation of all of these regulations -- and privacy - while it may cost something -- is worth it for the American people to give people trust and confidence in our nation's healthcare system and to let them know they can talk to their doctor and not worry. RAY SUAREZ: Can you, as a practical matter, if you're a person in the chain of information, guarantee who is on the other end, who is on the receiving end? You may think with a stroke of a key that you are sending information to an authorized viewer of it but in an office with 100 cubicles and 200 terminals, whatever, how do you know who is on the other end of that computer? JANLORI GOLDMAN: I would hope that our responsible hospitals and health plans in this country already have protections in place for people's privacy. I would hope that they don't give information out without wondering who is on the receiving end and without wondering who is doing what with information. I would hope they already have contracts and that they already assume liability. That is how our law works. That is how it should work. This regulation is meant to set a standard in place and to say we need uniformity; we need to have a baseline of protections. We shouldn't leave it to state laws that are all over the place. We need to create some fundamental protections in this area. And that is what it does. CHIP KAHN: One of the problems is the law does leave it to states, as well as the federal government. So there are state laws all over the place and as far as we read, those state laws are still in effect. The reg does not - the regulation does not preempt those state laws. So we are dealing in a computer age where someone could be in one state and there could be a set of rules -- and the information could be processed in another state and you are, which rules are you under? You are under the federal rule but you're also under whatever states the information passes through or the person receives care in. RAY SUAREZ: Chip Kahn, Janlori Goldman, thank you both.