Look What's Coming

by Wayne Myers, M.D.

The Price of Privacy

When I was a working doc I had no special concerns or insights regarding medical privacy. I tried to go by the rules and the spirit thereof, remember the Hippocratic oath, and that was that. Of late I am less certain that the value we attach to the privacy of medical records is justified. I’m becoming convinced that excessive concern about medical privacy is killing people. I doubt that medical privacy is worth dying for.

I am talking only about concerns that the wrong people might get access to medical records. I am not talking about the constitutional right to privacy or any other more weighty aspects of the concept. Nor am I going into the procedures mandated by recent changes in federal law. I’m sticking to the big picture. Should we be so very concerned about medical snoops?

The outline of my argument is as follows. Timely and reliable access to a person’s medical records can determine the person’s health or even survival. That access is tenuous for most of us. Concerns about medical privacy impede the development of regional or national medical information systems. Such information systems could support error detection, inform reliable care regardless of time or place, and accelerate treatment research. The interests most likely to use personal medical information against an individual are his/her insurance company and the employer who pays for some health insurance. They already get the information.

The lack of personal medical information is dangerous, as business travelers, vacationers and people involved in this summer’s hurricane evacuations have discovered. The situation is a little better but still problematic for people hitting the emergency room, conscious or not, after clinic hours.

I’ve never seen estimates of the number of deaths attributable to lack of medical records. Two separate studies have estimated the number of deaths due to hospital errors at 44,000 and 94,000 per year. My guess, based on years in various kinds of practice, would put the number of deaths attributable to lack of records a bit lower, i.e. a few tens of thousands per year. The number of people wearing medical alert bracelets suggests widespread concern with this problem. Test results and reports are often lost or delayed. The amount of time and money spent repeating studies is astronomic.

Is there a rural slant to this? Rural people are more likely to leave their home communities for a variety of reasons than urban folk—work, shopping, tertiary care. Wouldn’t it be nice if a person’s health records were readily accessible regardless of time or place?

Health care quality experts point out that mistakes are inevitable. Reducing damage due to mistakes requires several changes in the way we do health care. One such change is the development of digital record keeping which supports error detection. They also point out the value of automated registries. What percentage of our diabetics is getting their feet examined, eyes checked, sugars well controlled? These sorts of registry functions require digital records of the sort compatible with automated access.

The Indian Health Service has had a nationally accessible patient record system for decades. The Department of Veterans Affairs system is attracting lots of favorable attention.

Progress is being made. The developing pattern is based on Regional Health Information Organizations, or RHIOs. There are about 400 such RHIOs in various stages of development. Federal involvement is being managed by the Office of the National Coordinator of Health Information Technology (ONCHIT). If you’d like to know more go to http://www.dhhs.gov/healthit/. As you might expect, it’s a pretty good web site.

Wayne Myers, a pediatrician, founded the University of Kentucky Center for Rural Health and served as its director. He also served as director of the Office of Rural Health Policy in the Department of Health and Human Services' Health Resources and Services Administration. He is a past president of the National Rural Health Association and currently serves on its Board of Trustees.