IN RESPONSE:
My comments focused on how soon we would have large-scale, clinical data sets merging information from all institutions within a state or region, with the specific intent of comparing quality of care across hospitals. I acknowledged, as Drs. McDonald and Aller affirm, that technical considerations are not the limiting factor. Standards for electronic transmission of clinical information exist and are increasingly used throughout the industry. My tone was cautions because of practical considerations (such as money), as well as societal concerns about protecting patient privacy and confidentiality.
Drs. McDonald and Aller indicate that most hospitals with more than 200 beds have electronic laboratory reporting systems. However, according to the 1994 American Hospital Association annual survey, only 30% of reporting facilities have more than 200 beds. Many U.S. hospitals are small-about 22% of survey respondents have fewer than 50 beds and about 47% have fewer than 100. Certainly many small facilities possess electronic laboratory reporting systems, but probably others do not. Purchasing computers and software is only the initial outlay; ongoing resources are required for staff to maintain the computers and troubleshoot problems. Even large facilities may not have resources to implement new electronic transmission standards for limited administrative transactions, such as those envisioned in the 1996 Health Insurance Portability and Accountability Act (HIPAA, P.L. 104-191, the so-called Kassebaum/Kennedy bill). When testifying about the impact of HIPAA's electronic data transmission standards, a representative of Los Angeles County Department of Health Services (which operates large hospitals as well as numerous other care settings) raised their anticipated $123 million deficit. "The proposed standards ... to enable health information to be exchanged electronically will further compound" their financial difficulties, she testified, and could "impact patient care" [1].
Having standardized electronic information within institutions is only the first step; data must then be aggregated across facilities into a giant database for analysis. Increasing standardization, including the possibility introduced under HIPAA of a unique nationwide health care identification number, raises concerns about protecting patient confidentiality and privacy. The HIPAA contains language stipulating adoption of federal measures to protect confidentiality and privacy. What these measures will be is under debate within both the administration and Congress. Privacy advocates' most extreme position holds that individual patients' data must never be transmitted outside specific care settings without obtaining explicit informed consent from each patient. Even less stringent privacy protections could limit production of multi-institutional, longitudinal databases for monitoring hospital quality, practice profiling, or health services research.