The need for guidance and consistency in adolescent privacy policies: a survey of CMIOs

Abstract

Research examining whether and how adolescent patients should gain access to their electronic health records is gaining momentum. We conducted a survey to explore diversity in adolescent privacy policies and identify common approaches in health information technology management for adolescent patients. Through descriptive analyses of survey data, we found a wide range of institutional policies regarding adolescent patient privacy, and large variations in health IT executives' baseline knowledge of access policies. A majority of respondents agreed that formal guidelines pertaining to adolescent health record privacy would be helpful. Respondents suggested that these guidelines can be developed through the synthesis of multiple perspectives, including those of pediatricians, adolescent specialists, privacy experts, parents, patient advocates, and other professional entities.

Figure 1:

Survey study participation. After 39 respondents were assessed for eligibility (institution has an EHR system and serves a pediatric population) 27 participants met the eligibility criteria. The majority of these 27 (78%) answered questions about whether institution offered online personal health records or patient portal accounts for adolescent patients.