The front page of the New York Times today carried a story by Pam Belluck on a hospital’s promotional webcast of Shila Renee Mullins’s brain surgery to extract a malignant tumor, which raised conflicting opinion is about the wisdom, benefit and ethics of the public dissemination of personal medical information, even if consensual, and the public access to dramatic interventional medical procedures. Some hospitals are featuring twittering during operations in order to apprise relatives and others of the progress of thee procedure in real time.
The recent growth and predicted exponential proliferation of electronic data transfers from personal medical monitoring devices to personal medical record platforms and data bank repositories further complicates the debate. Experts predict that there will be 15 billion intelligent internet connected devices transmitting medical information by 2015.
In January, 2006, the New York City Health Department stimulated much debate and concern when it required 120 New York medical testing laboratories with electronic data transfer cap ability to report data on patient blood sugar levels to the Health Department to assist in the public health effort to combat diabetes. It is no secret that chronic and debilitating public health scourges like diabetes are extremely expensive to combat and frequently morph into other high impact/cost conditions like blindness, leg amputations and kidney failure.
The New York policy also required the advisement of patients and physicians of the existence of dangerous levels glycosylated hemoglobin (“A1c”) Physicians complained that the collection and reporting of A1c data unreasonably infringes upon clinical autonomy and interferes with the therapeutic relationship, in addition to the basic privacy issues.
As the shear volume of medical data accumulates from internet sources there will be three critical, related tensions that will be confronted in healthcare. The first is how to effectively process and utilize the mountains of data that will be available and what are the legal ramifications for failure to to access and act upon the right data. The second is what the extent to which the public’s interest in controlling the spread of chronic and contagious conditions will require the erosion of medical privacy protections. The Third is, what is the extent to which the public, itself, is willing to forgo concerns about medical privacy in exchange for connectivity in the Health 2.0 movement, for notoriety or to fulfill a desire to contribute the public weal.