Sunday, May 20, 2007

Medical Bloggers: Held to a Privacy Double Standard?

I took a much-needed blog-break while on call this weekend, but have been reeling from the recent loss of some of the most creative and outspoken members of the medical blog-o-sphere. These were anonymous physician bloggers - folks who made an honest attempt to conceal people's identities by concealing their name as well. The cloak of anonymity permitted these doctors to add an unfettered and unique voice to the humdrum of daily medical, legal and corporate vernacular. At least so we thought.

But with the advances of information technology via the Internet comes the ability to track URL's and individual computers via IP addresses. Anonymity, it seems, runs only so deep. Advertisers know this. So do marketers and politicians. And yes, lawyers.

Two examples stand out: first, was Flea - by one poll the most popular medical blogger of 2006. Flea is a pediatrician who was sued and exposed his experiences preparing for his upcoming malpractice trial in great detail. At least until one lawyer exposed the legal entanglement of that approach: within a week his blog had disappeared from the internet.

The second was that of Fat Doctor, a sharp-tongued witty physician who shared her insights and experiences via her blog, but whose blog was revealed by a co-worker to her boss, and in the interest of preserving her job, she pulled her blog from the internet. What the issues were we are left to surmise, but the recent issue of the USA Today might offer some clues:
Such stories, of course, raise a question: Should we all worry that our doctors are blogging about us — and potentially violating our privacy?
While this concern is worthy of consideration, are we asking physician bloggers to uphold a double standard? While most physician bloggers I know are keenly aware of the perils of patient identity disclosure, it seems we must go to unprecedented lengths to conceal the identity of any case we discuss. This is in stark contrast to case reports discussed in prestigious medical journals like the New England Journal of Medicine (NEJM), which only requires that a release form be signed by an identifiable patient before publication. Does this fulfill enough of the requirements for informed consent for a patient? The Journal of the American Medical Association (JAMA), goes further and requires patients to sign a release, a consent to publish (in print and online), and must be shown the manuscript before its publication. But as others have argued, such disclosure, in some circumstances, could be deemed unethical:
Society cannot tolerate blindly trusting the wouldbe author to appropriately balance patients’ needs against professional opportunity. Physicians can be selfserving and amoral. Professional judgments may be poor when doctors are impaired by medical or psychiatric illness. Ethics committees and institutional review boards exist to protect the rights of patients and research subjects. Nazi doctors’ experiments, Tuskegee syphilis experiments, trading sex for medications, and other outrages remain in our collective professional minds.

The publication of a disguised case history without permission, however, is not comparable to these moral and ethical violations. Authors who do not believe that a particular patient’s permission should be sought are not necessarily unethical: they weigh their obligations differently. In other ethical controversies, it is well recognized that reasonable people reach opposite conclusions. On the one hand, many psychiatric patients are too fragile, ashamed, private, or well known for the therapist to write about them. On the other hand, physicians need to read about difficult patients with poor ego defenses, chronic instability, paranoid psychopathology, or chaotic sexual lives because we need the perspectives of others to guide our difficult work. We believe psychiatry should continue to have trust in the professional’s judgment and goodness rather than create a standard that will either backfire and hurt patients or severely limit professional opportunities to benefit from this pedagogical vehicle.
In the past and even now, physicians have understood the value of a good case report. A unique case that discloses a new physical finding, constellation of symptoms, or nuance of a well-established disease presentation can be an invaluable instructional tool. One need only turn to a recent New England Journal of Medicine (NEJM) to see such an example. In this particular case report, a 59 year-old man's facial picture is displayed. His features are clearly recognizable - particularly to the patient humself. Was the NEJM's release form enough to protect the patient from, say, potential discrimination by his workplace regarding the disease discussed? Or does the publishing of the picture better serve the interests of the NEJM who stands to profit from their subscriptions based on content provided, in part, by this patient's contribution? Ethical lines become blurred. So, is a blogger's attempt to conceal patients' identities by "cloaking" themselves in an anonymous pseudonym, changing patient gender, age, or case specifics ethically substandard compared to our journalistic counterparts?

To better define a blogger's reponsibilities to avoid such ethical conflicts, I like what Dr. Rob has started: a medical bloggers’ code of conduct. I encourage all to review it and comment as medical bloggers collectively try to wrestle with the ethical domain of the internet, especially as it relates to our patients’ privacy and wellbeing. While every case is unique, medical generalities gained from a case can also be beneficial to future patients. Better defining a physician blogger's responsibilities relative to their patients' circumstances will only strengthen the doctor-patient relationship.

-Wes

Addendum: 21 May 2007 @ 1230 PM CST - TBTAM adds her thoughts.
Addendum #2: 21 May 2007 @ 1433 CST - Dr J.'s Housecalls tribute to Flea and other reflections.

Addendum #3: 21 May 2007 @ 19:46 I just realized that commentary was somehow inhibited by Blogger. It is back on. I regret the error.

2 comments:

Vegan Doc said...

Dr. Wes, Thanks for articulating those thoughts so well. As a physician blogger whose identity is not hidden, I have had some challenges in my year and a half of blogging in determining exactly what I can and cannot blog about. I can't talk about my patients, and I know that whatever I write needs to reflect positively upon me as a physician were any of my patients or colleagues to read it.

Erin Romanski said...

You make some excellent points as to the double standards of blogging in a HIPAA Act-infused society.

Our publication, MD Net Guide, touched on this issue recently. View more on medical ethics and blogging at http://mdng.com/exclusives_detail.cfm/exclusive/75.htm.