Confidentiality concerns may delay health IT investment

According to Robert Pear in today's New York Times, a wrangle over the confidentiality of health information could delay a $20 billion federal investment in Health IT. Some of the proposals seem pretty smart, like outlawing the sale of health records without the patient's permission.

Others strike me as seriously flawed, such as not allowing the routine transfer of electronic health information for care of the patient without specific permission. (Although HIPPA does not require this permission for care, the early proposals did. Even now, many folks still believe that they cannot transfer medical records to the patient's doctor without a specific permission - causing endless delays, confusion, and rework.) If interpreted too strictly, we could be in the position of knowing some information that could improve a patient's health or even save a life, but be constrained from acting on it. Public Health IT, in particular, could be seriously compromised - think tracking infectious diseases, but not being able to tell patients who might have been exposed.

A more difficult proposal is to allow patients to segregate some of their medical records as too embarrassing to allow out even with the confidentiality rules used for general medical information. I can certainly understand that information related to mental health, sexual behavior, paternity and a host of other issues needs to be handled with care. However, I believe that 1) all health care information deserves that level of care and 2) mental health, in particular, has suffered as medicine's step-child due to assumptions that it is somehow "different" or "special." Bringing these issues into the medical fold may be very benficial, as it was for cancer and diabetes, which are no longer "shameful."

The problems of data security and confidentiality that have been widely publicized (leaking health records to the press, for instance) do call for action. However, the best action would be serious enforcement of laws and standards that currently exist, rather than an extensive re-write.