As a new century begins, Americans are coming to terms with the enormous potential for abuse inherent in modern technology. Information sharing is a two-edged sword: used in the right way and for the right reasons, it can save lives; used in the wrong way or for the wrong reasons, it can ruin them.
Health statistics data are clearly important to communities, public health professionals, health care providers, researchers, the media, and policy makers. For most purposes, these data can be shared in an aggregated form that protects the privacy of individuals. For some clinical and public health purposes, it may be necessary to share individual record-level data under strict procedures for confidentiality. Although the evidence suggests that health statistics systems have done a good job of protecting confidentiality, there is still fear and even some risk that individuals can be identified and their information misused. The greatest concern is that records collected, created, or compiled for statistical purposes might be used to make substantive determinations about individuals or groups by law enforcement, insurers, employers, or others.
The concerns about privacy violations must be taken seriously. At the same time, other important considerations should be recognized: that the confidentiality of paper records is equally or even more in question than that of electronic records, and that information technology actually can be used to enhance privacy protections. Furthermore, if fears about privacy undermine people’s willingness to allow even limited access to or use of personal information for important public health purposes, the result can be incomplete information, leading to wrong policy decisions and wrong public health interventions.
A Vision for 21st century health statistics must address all these factors and strike a balance between individuals’ desire for privacy and the imperative to improve everyone’s health¾a need that cannot be met, as we have seen, without information on such things as communicable disease, health hazards, and treatment outcomes. The issue to be resolved is how we can create adequate protections against inappropriate access and the abuse of personal information while at the same time preserving controlled access for public health agencies, health care providers, researchers, and others who need information in order to care for and improve our health.
Those with a vision for health statistics agree on the need for a two-pronged approach to this critical issue. First, and most important, the country must have strong national and state legislation that implements fair information practices and establishes strong punishments for abuses. Increased sharing of data is inappropriate without increased protections for the privacy of individuals. In order to allow for increased sharing and linkage of data, we need health statistics privacy laws that prevent individual health statistics records from being accessed and used by police, prosecutors, employers, insurance companies, marketers, and others who might use the data in a way that adversely affects the subjects of the data.
Second, Americans and their policy-makers need to become more aware of the ways in which we all depend on health statistics; and those responsible for health statistics must ensure that health statistics tell Americans what they need and want to know about their health.