Large Medical Databases, Population-Based Research, and Patient Confidentiality

Abstract

Public domain research should be distinguished from proprietary or commercial uses of health information, and existing privacy safeguards should be vigorously applied. In our efforts to protect patient privacy, however, we should take care not to endorse or reinforce prejudices against psychiatric treatment and people who suffer from psychiatric disorders. Neither should we ignore important opportunities to improve quality of care and influence public policy through population-based research.

Randomized trial showed that an “embedded” survey strategy optimized authorization rates compared with two “after survey” strategies in veterans with PTSD

“…stigma associated with psychiatric disorders and treatment'' [23, p. 1731]. As Simon et al [23] note, population-based studies using large administrative data have been critical in identifying best-practice gaps in depression treatment and in describing the impact of restricting insurance coverage for mental health on clinical outcomes. However, when access to such databases becomes biased according to a characteristic that is also associated with study outcomes, findings are likely to be flawed and even misleading.…”

An epidemiologic approach to the development of early trauma focused intervention

“…One manner in which the acute care traumatic injury research programs have operationalized an epidemiological approach to intervention development is through the use of population-based automated data systems (Simon, Unutzer, Young, & Pincus, 2000;Zatzick et al, 2000). The population-based automated data systems provide clinical and demographic information on all patients treated within the acute care inpatient setting so that characteristics of an individual patient or subgroup of patients included in an investigation can be compared to the population of patients presenting for care (Figure 2).…”

Creation of Clinical Research Databases in the 21st Century: A Practical Algorithm for HIPAA Compliance

“…The Veterans Affairs health system represents the largest single electronic patient record in the United States and has recently been evaluating the implications of combining regional datasets into a single accessible record under the new HIPAA guidelines [20]. A number of institutions have reported previously upon the issues relating to database access, maintenance, and privacy considerations, with a unifying theme that privacy regulations hamper effective use of these data by researchers [21][22][23][24].…”