Privacy and Health Research. 2. Health Data and Data Holders


Several current changes in the context within which health data are collected and used must be recognized. First, the boundaries between classical medical care and "public health" are becoming ever less distinct. Over the past decades the rubric, "health," has been broadened to include many matters—from hyperactivity in children, to teenagers' nose shape, to memory loss associated with aging—that earlier were not viewed as matters of health, much less of medicine. At the same time, medical science has come to accord much more importance to such ordinary life factors as diet and stress as determinants of health, and therefore addresses them in medical care.29

This Report covers the whole range, and where distinctions are not sharp it refers to "health," which, after all, is the end of medicine. "Health data" includes all data collected under physicians' supervision, but also a wide range of other data that relate to health.

An expansive definition such as Lawrence Gostin's is necessary:30

The term "health data" is broadly defined as all records that contain information that describes a person's prior, current, or future health status, including [cause of disease], diagnosis, prognosis, or treatment, or methods of reimbursement for health services.

To quote an example from a statute, the newly enacted "U.S. Health Insurance Portability and Accountability Act" reaches broadly, as it must (§1171(4)):

The term "health information" means any information, whether oral or recorded in any form or medium, that—(A) is created or received by a health care provider, health plan, public health authority, employer, life ensurer, school or university, or health care clearinghouse; and (B) relates to the past, present, or future physical or mental health or condition of an individual, the provision of health care to an individual, or the past, present, or future payment for the provision of health care to an individual.

Second, of course, health care has been evolving into systems, andsystems of systems. As a consequence, the traditional clinician's notes, scribbled down or dictated and later transcribed, and then locked up in filing cabinets, increasingly are being recorded along with other files in electronic media, usually networked.31

And third, the trend clearly is toward not only recording health information in computerized form, but indeed basing health care around the "lifetime linked-data dossier" on the person. Many advantages are evident for assembling health data from disparate sources, understanding the person's life-and-health trajectory, providing health-promotion input and health care, transmitting orders and analyses, and networking and consulting at distances. Many advantages are evident for billing and paying, administrative review, and research. And as well, there can be many advantages for the patient's own awareness and documentation of his health "story."

Public-health records are being computerized just as quickly. In the future envisioned by seers, many aspects of public-health surveillance (such as scanning for infectious disease outbreaks), compilation of statistics (use of hospital outpatient services...), development of registries (vaccination...), and other analytic collections (effects of pharmaceuticals...) will simply be derived, whenever and in whatever form needed, from the networked lifetime dossiers.

These visionary technical developments, which are very exciting but not without negative aspects, are being explored diligently by many institutions.32,33 A potential vulnerability, even the "Achilles heel," of this movement is whether it will be able to deal adequately with privacy, confidentiality, and security.

(29) Kerr L. White, Healing the Schism: Epidemiology, Medicine, and the Public's Health (Springer-Verlag, New York, Berlin, and Heidelberg, 1991).

(30) Lawrence O. Gostin, as cited in endnote (4).

(31) One appreciates the remark, the validity of which is now fading, by the distinguished physician Sir Douglas Black (personal communication): "The only privacy protection the poor patient has left is the doctor's bad handwriting."

(32) Institute of Medicine, Richard S. Dick and Elaine B. Steen, editors, The Computer-based Patient Record: An Essential Technology for Health Care (National Academy Press, Washington, DC, 1991). A distinctive aspect of this report is its promotion of computer-based medical records, beyond merely computerized versions of traditional records. (A Revised Edition is forthcoming, 1997.)

(33) Institute of Medicine, Committee on Evaluating Clinical Applications of Telemedicine; Marilyn J. Field, editor,Telemedicine: A Guide to Assessing Telecommunications in Health Care (National Academy Press, Washington, DC, 1996).