NRPM: Standards for Privacy of Individually Identifiable Health Information. Qualitative Discussion


A well designed privacy standard can be expected to build confidence among the public about the confidentiality of their medical records. The seriousness of public concerns about privacy in general are shown in the 1994 Equifax-Harris Consumer Privacy Survey, where “84 percent of Americans are either very or somewhat concerned about threats to their personal privacy. 17 A 1999 report, “Promoting Health and Protecting Privacy” notes “...many people fear their personal health information will be used against them: to deny insurance, employment, and housing, or to expose them to unwanted judgements and scrutiny." 18 These concerns would be partly allayed by the privacy standard. Further, increased confidence will increase the likelihood of some people seeking treatment for particular classes of disease. It will also change the dynamic of current payments. Insured patients currently paying out-of-pocket for confidentiality reasons will be more likely to file with their insurer. The increased utilization that would result from increased confidence in privacy could be beneficial under many circumstances. For many medical conditions, early treatment can lead to lower costs.

Fear of disclosure of treatment is an impediment to health care for many Americans. In the 1993 Harris-Equifax Health Information Privacy Survey, 7 percent of respondents said they or a member of their immediate family had chosen not to seek medical services due to fear of harm to job prospects or other life opportunities. About 2 percent reported having chosen not to file an insurance claim because of concerns with privacy or confidentiality. 19 Increased confidence on the part of patients that their privacy would be protected would lead to increased treatment among people who delay or never begin care, as well as among people who receive treatment but pay directly (to the extent that the ability to use their insurance benefits will reduce cost barriers to more complete treatment).

The following are four examples of areas where increased confidence in privacy would have significant benefits. They were chosen both because they are representative of widespread and serious health problems, and because they are areas where reliable and relatively complete data are available for this kind of analysis. The logic of the analysis, however, applies to any health condition. Even for relatively minor conditions, an individual still might be concerned with maintaining privacy, and even a person with no significant health problems is going to value privacy because of the possibility at some time they will have a condition that they want to keep private.