Medical confidentiality, Ebola, and the media

Medical information is supposed to be kept private. Only shared between the patient and his doctor. Or the hospital (or other health care provider [HCP] like a laboratory, imaging center, clinic, etc.) and persons designated by the patient.

For example, the patient may permit his doctor to release information about his condition to his employer if he needs an excuse for missing work. But that has to be at the express request of the patient.

If a patient needs a pre-employment physical, for example, he has to sign a release allowing the examining physician to send the results of the exam to that prospective employer. If the patient later wants that same exam sent to a different employer, he heeds tot do a new authorization specifying the name of the new potential employer. That, is, he can’t do a single release stating that the pre-employment physical can be used for any employer. HCPs who release information (except in certain specific circumstances) are subject to fines and possibly other consequences. Of course, this is to protect the patient’s privacy.

The Ebola virus, courtesy of Shutterstock

The Ebola virus, courtesy of Shutterstock

A patient’s health information can be shared under certain circumstances without his written consent. If, for example, an HCP is subject to a court order requiring it to release the information, it must do so. But any time that the HCP releases information not at the patient’s behest, it must notify the patient of the details of the release.

Many of these regulations stem from the Health Insurance Portability and Accountability Act (HIPAA) that was enacted in the 1990s. A specific part of HIPAA governs the release of medical information and covers the specific details of what can be released, who can authorize the release, etc. Usually the information released has to be the minimum that will satisfy the needs of the request. In the medical excuse from work, for example, the HCP will only release information about that specific examination. It wouldn’t include other medical information that wasn’t pertinent (e.g. the fact that the patient had a baby three years previously wouldn’t be included.)

HIPAA, however, doesn’t apply to the news media. Names, addresses, medical diagnoses and other information can be nationwide news at any time, regardless if the patient consents or not. This is often a significant problem for the patient(s) involved.

Most recently this has happened with the Ebola outbreak, especially the cases that have occurred in the US.

Thomas Eric Duncan’s name, photos, pictures of the apartment where he was staying, information about his girlfriend and family were suddenly all over the internet, on television and on print media.

In spite of officials at from the CDC and Emory University Hospital trying to keep the names of the citizens evacuated for treatment to the US private, in almost no time everyone knew about Kent Brantly and Nancy Writebol.

Nina Pham and Amber Vinson suffered similar publicity. So did Rick Sacra, Kaci Hickox, Craig Spencer and Ashoka Mukpo.

These people should have been afforded more privacy. They shouldn’t have had their conditions and, in some cases, addresses and other personal information released. It would still be wrong for their medical information was made public even if it were something like a disease like diabetes. But it’s much magnified when their names (and photos) are linked to Ebola.

Symptoms of Ebola, by Mikael Häggström.

Symptoms of Ebola, by Mikael Häggström.

While millions of people were concerned for these patients, others were less charitable. Duncan, some members of his family, Vinson and Hickox all received death threats on social media. Death threats because they contracted Ebola from helping other people. Hickox seemed to receive more than others because a segment of our society perceived her as being deliberately defiant of the (unnecessary) quarantines in both New Jersey and Maine. That seemed to provoke even more rage hate. How dare she not just shut up and sit in a tent for three weeks? They probably would have felt the same even if they knew that she had an MPH (Master of Public Health degree from Johns Hopkins), a Diploma in Tropical Nursing from the London School of Hygiene and Tropical Medicine and had done a two year fellowship with the CDC In their Epidemiology Intelligence Service (EIS). Panic, hate and clear thinking don’t make comfortable bedfellows.

These people may continue to suffer consequences for years in the future because of being outed with Ebola. Their careers could easily be affected. One nurses’ union at Bellevue Hospital has reported that some nurses who work part-time at other hospitals have been told not to come to work there because of their (possible) contact with Ebola. One nurse said that his offer of a faculty teaching job was withdrawn. Another said that she was told not to bring her child back to his day care because she worked at Bellevue. And these nurses have been shunned because the work at Bellevue, not necessarily even because they’ve had contact with an Ebola patient. Imagine the backlash that actual recovering Ebola patients could face with respect to employment, housing, education and social support.

Pham, Sacra, Spencer, Vinson and all the other recovering Ebola patients, as well as those HCPs who care for Ebola patients , Hickox and hundreds of others, deserve much, much better. And so do we as a nation.

Mark Thoma, MD, is a physician who did his residency in internal medicine. Mark has a long history of social activism, and was an early technogeek, and science junkie, after evolving through his nerd phase. Favorite quote: “The most exciting phrase to hear in science... is not 'Eureka!' (I found it!) but 'That's funny.'” - Isaac Asimov

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5 Responses to “Medical confidentiality, Ebola, and the media”

  1. Badgerite says:

    For my money these healthcare workers are heroes. An epidemic can become a pandemic if not contained. These people risked their lives to contain it and some of them did so at ground zero in West Africa where the danger is greatest. The national and political freak out is ridiculous.
    Thomas Eric Duncan contracted the disease abroad, traveled home on an airliner full of people, lived in a small apartment with members of his family while symptomatic, and the only person who caught the disease from him was ONE of the nurses who treated him in his final days when the disease is the most contagious. That nurse is the only person to have contracted the disease in America and she survived, probably due to early diagnosis and treatment. Kaci Hickox tested negative for the disease twice, was asymptomatic and the country freaked out because she went for a bike ride in the country.
    And this is one of the people who risked her life to keep that disease contained in West Africa.
    This isn’t the middle ages though by some people’s response you would think that it is.

  2. BeccaM says:

    This has been a problem for a very long time. I remember the issue of medical privacy and the need for legal protections coming up rather frequently during the earliest and worst years of the HIV epidemic. Unfortunately, nothing was done then either…and here’s the thing: This Ebola outbreak will be over and all but forgotten before there’s even a serious policy debate.

  3. docsterx says:

    I’m not so sure that there are legal grounds that prevent the press from using medical information. Though that could vary by state. HIPAA and state laws prevent the release of HIV information. But if that information is released, I’m not sure that anything prevents the press from going public with it.

    This might be something John might want to weigh in on

  4. Bcre8ve says:

    Not only in this issue, but in others, the media has been wildly irresponsible with people’s personal information, but the media has also rejected any form of responsibility, real or even moral, for ruining these people’s lives – many, many times completely without basis. Then they move on to the next victim.

    Remember when journalism used to be one of the “noble pursuits”? Those were the days!

  5. GarySFBCN says:

    I’m surprised that there are no laws regarding “medical privacy” and the press. I believe that there were/are laws regarding medical privacy and the press regarding HIV test results/HIV status, (but not AIDS diagnosis) no?

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