Electronic health records, personal health records, and noncommunicable disease interventions: The role of information technology in the debate over expanding public health practice

Epidemiologists and public health practitioners have increasing access to expanding pools of individual and collective health and behavior information. While there is no good argument in favor of high-fat diets, smoking or riding a motorcycle without a helmet, there are legitimate questions about whether individuals should be penalized for these behaviors and what kinds of incentives are appropriate to reduce them. These questions are being shaped by ever-growing data from electronic health records and will, it may be hypothesized, be shaped by data in personal health records. The extraordinary utility of personal digital health information may be at risk if it is used to punish as well as educate. Indeed, fears of disincentives may lead to a lack of truthfulness by patients and a consequent corruption of data sets needed for research and to shape educational interventions. This is in large part an empirical question, and it points the way to urgent new public health research priorities: How should data from personal health records be used? Will clinicians be asked to withhold information from patient records? There might be lessons from the prior success of “super-confidential” HIV reporting laws, which in some jurisdictions increased the willingness of at-risk patients to be tested, slowing growth in the incidence and prevalence of HIV. The goals of public health might best be served if they are based on prevention-based interventions and education.