TOPICS > Health

Health Record Privacy Matters

September 16, 1997 at 12:00 AM EDT

PHIL PONCE: Health & Human Services Secretary Donna Shalala is calling for legislation to protect the confidentiality of health records.

DONNA SHALALA, Secretary, Health & Human Services: Every day our private health information is being shared. It’s being collected and analyzed and stored with fewer federal safeguards than our video store records. Let me be frank. The way we protect the privacy of our medical records right now is erratic at best and dangerous at worse.

PHIL PONCE: Medical records contain some of the most sensitive of personal information, including sexual orientation, past drug use, psychiatric treatment, and genetic predisposition to various diseases. In the past access to medical records was limited mostly to doctors, some hospital personnel, and insurance company workers. But in the complex and increasingly computerized world of health care today the number of people who can legally look at intimate details of a person’s health history is growing rapidly. Managed care companies can use patients’ computerized records to check the care clients are getting and identify ways to prevent illness and disease.

Some records are available to the growing number of administrators and researchers who monitor health trends for the multi-billion dollar health information industry. In some cases personnel departments have access to employees’ medical and insurance records. Pharmacies keep extensive records of what drugs consumers use and can circulate that information to drug companies targeting potential markets. But several recent cases have pointed to serious misuses of information. For example, last year, a list of 4,000 people with AIDS or HIV was mailed to the “Tampa Tribune.” And when it was discovered that employees at the Harvard Pilgrim Health Plan had access to psychiatric sessions of patients, the HMO changed its policy. The Privacy Act of 1974 was the last major federal law passed to protect sensitive personal information. But that law only regulates the way federal agencies keep records on individuals. While many states have some protection, only a few states have comprehensive laws protecting confidentiality.

Under a health insurance reform bill passed last year, Congress called on the Clinton administration to create new privacy guidelines. Sec. Shalala says that the administration’s approach is to balance the interest of individuals’ privacy with those of public health and law enforcement.

SEC. DONNA SHALALA: The question is: What can we do? Some say that we’ve already lost the battle. They say that privacy in this new electronic world is impossible. There are others who say that consumers should not only have control over their health information; they should have complete control. They say that Americans should even have the power to ensure that their records are kept on paper, not on computers. We believe that both sides are wrong. We cannot turn back the hands of progress, or turn our backs on public responsibilities like research or fighting fraud and abuse, and we shouldn’t. But we can and we must look ahead and safeguard our fundamental right to privacy in an ever-changing world.

PHIL PONCE: The Clinton administration proposal would require doctors, hospitals, and insurance companies to release individual patients’ record mainly when needed for medical treatments and payments, establish new federal criminal penalties for misusing confidential information, guarantee patients the right to see their records, correct them when wrong, and find out who else has looked at them. But it would allow the health care system to look at records to monitor quality and audit expenses. And it would also make an exception for law enforcement authorities checking for health care fraud. They’d have access to records with few restrictions and without the patients’ knowledge.

PHIL PONCE: Joining us now attorney Heidi Wagner Hayduk is a consultant for the Healthcare Leadership Council, a coalition representing insurers, hospitals, drug companies, and other members of the health care industry. Psychiatrist Denise Nagle is executive director of the National Coalition for Patient Rights. Dr. Nagle, before we get into the specifics of what the administration wants to do, just how severe is the problem of medical privacy?

DR. DENNIS NAGLE, National Coalition for Patient Rights: Well, I think that your taped piece that you showed first was an excellent demonstration of just how many people have access to our records right now. And I wanted to really commend Sec. Shalala for her recognition that privacy is essential for quality care because she really outlines that if we don’t have privacy, we’re going to have deterioration of our health care system.

PHIL PONCE: Dr. Nagle, one of the things the Secretary said was that there’s greater protection for video records than there are for medical records. Was she overstating it, or do you agree with that?

DR. DENNIS NAGLE: She’s not overstating it, but I have to say that the way the administration recommendations are going right now there is so much broad access that is given for the purpose that was outlined of medical treatment and payment, the way we define medical treatment and the way medical treatment is defined in the administration proposals is very, very different, and their definition of medical treatment would be so inclusive as to, I think, include what I believe is the administration’s ideologic commitment to merge the private practice of medicine and all the information that’s contained in that private practice of medicine with the functions of the public health care system.

So I think that we really have to recognize and go back to the fact that the administration realizes that in order to have quality care for patients to share information openly and honestly with their physicians and for physicians to record it accurately, people have to be reassured that the system is not leaky and this information is just not going to flow freely between private pay, self-pay, public and private insurance, all these systems, and public federal agencies.

PHIL PONCE: Ms. Hayduk, you heard her assessment of how severe the problem is. What does the industry think?

HEIDI WAGNER HAYDUK, Healthcare Industry Consultant: Well, the industry is definitely supportive of federal standards to ensure patient confidentiality of health information. I think that’s a very, very important point to make. Dr. Nagle’s absolutely correct that some states have strong confidentiality and protection; some states do not. So the extent to which consumers are protected really vary right now. So federal standards in this area are really important, very crucial. We also agree and commend the Secretary for her recommendations and feel that she definitely tried–I think–the goals and principles that she outlined tried to recognize and balance very effectively patients’ concerns with privacy, with the industry’s need to use health information to continue to promote quality care for individuals.

PHIL PONCE: Do you feel, though, that–do you feel, though, that the flow of information is apt to be interrupted in a way that would be detrimental to the operation of the system?

HEIDI WAGNER HAYDUK: Well, that’s what we’re concerned about. And while we agree with the principles and goals that the Secretary outlined, I think that translating now those principles into real world solutions and policies is another question, and we’ll have to wait and see. Definitely the industry is very concerned though about interrupting the flow of health information. The purpose of the medical record, I think we need to remember, is to provide the patient with high quality care when they present in the office. It’s not that we have this desire to snoop through information.

We want to make sure that we’re providing the highest quality care; that it’s no longer just a diagnose and treat kind of system. Every day we’re in search of new ways, better ways to enhance the quality of health care that is provided to consumers and how to provide them more affordable health care services. And information is key to all those activities.

PHIL PONCE: Dr. Nagle, how do you respond to the industry’s need to monitor the quality of health care that patients are getting, to make sure that the people aren’t cheating, that there’s good auditing going on?

DR. DENNIS NAGLE: Well, again, what we commend is the Secretary’s recognition that privacy is essential for quality care. We are very troubled by a lot of the actual recommendations, which do not recognize the right to medical privacy and also allow for a very extensive free flow of information far outside of the health care treatment encounter. It’s going far, far outside of the doctor’s office into government agencies and federal agencies.

Now, the industry’s need to be able to monitor quality care and the need to be able to do fraud and abuse investigations are very, very important things in a health care system. But what’s important to recognize is that this word “balance” is misused in the way it’s being stated now. What we need to do is to first establish privacy so that we can have quality health care because Sec. Shalala, herself, says if we don’t have privacy, we’re going to have a deterioration of our whole health care system. Once we have established privacy, then we can figure out how to do these other monitoring functions within a privacy protected and patient centered system.

PHIL PONCE: Dr. Nagle, when you say privacy, do you mean that a patient should have the right to sign off every time his or her medical records might be going to whatever location?

DR. DENNIS NAGLE: No. The issue isn’t to try to put lots of pieces of paper in front of the patient and burden the doctor and patient with nuisance type paperwork. The purpose is really to give the patient a real control over how their information is used. For instance, most people, if explained about a good research project for advancing medicine, most people would voluntarily want to contribute to such a study. And it really is good for them and it’s good for the country to invoke their altruism of wanting to participate. But one of the things that we’re–

PHIL PONCE: Dr. Nagle, who is getting this information who shouldn’t be getting it?

DR. DENNIS NAGLE: Well, right now, the information, as you showed so well in that tape you showed ahead of time, is just flowing not only freely within hospitals, where everyone with a password has access to everyone’s record, but then it’s flowing–it’s being allowed to be used for what’s called administrative research. And that administrative research is for the bottom line of the health care organization and the patient is not even–does not even know their knowledge nor their consent is required for this type of administrative bottom line research to go on, and it doesn’t even require institutional review boards, which clinical research requires.

PHIL PONCE: Ms. Hayduk, how about that, is the information flowing too freely within the health care industry?

HEIDI WAGNER HAYDUK: I disagree with that. I think the industry already has in place lots of standards and protections to protect the confidentiality of the information they’re using. But the types of research that health plans and hospitals and providers and pharmaceutical companies are doing are all for the benefit of the consumer. And Dr. Nagle is right. Not all research is done under the IRB process, nor should it be. Health plans are actively–


HEIDI WAGNER HAYDUK: I’m sorry. That’s the government process for an institution review board that actually reviews clinical research that pharmaceutical companies are undertaking. There’s a lot of other types of research that benefits the consumers. These are the types of activities that help define what are the best practices that physicians can use within a health network to make sure you’re getting timely care, the best possible course of treatment, what are ways to continue to make care more cost effective. These are all things that benefit the consumer, and, again, information is key to all of these. And I think that those types of research activities we must be careful not to stifle. And if we take too careless an attitude about this whole issue and do create a system where, in fact, authorization is required every time information changes hands, it’s this type of medical innovation that will be stifled.

PHIL PONCE: Dr. Nagle, even though you may have some reservations about the specifics of the administration’s plan, is this a step in the right direction? I mean, what would happen if there were no legislation?

DR. DENNIS NAGLE: I think first of all this–these recommendations would, in fact, make things worse, but before I answer that question I just wanted to respond to the last statement. If all of this research that’s administrative and bottom line research is being done for the patient’s good, why not ask the patient’s permission? But let me continue and respond to your question, would the administration proposals make things better or worse–I think they would really make things worse.

PHIL PONCE: And with that, Dr. Nagle, I’m afraid we’re out of time. Thank you so much for joining us. Ms. Hayduk, thank you.