Considerations of Privacy and Confidentiality in Developing a Clinical Support Tool for Adolescent Tobacco Prevention: Qualitative Study

Abstract

Background Electronic clinical support tools show promise for facilitating tobacco screening and counseling in adolescent well-care. However, the application of support tools in pediatric settings has not been thoroughly studied. Successfully implementing support tools in local settings requires an understanding of barriers and facilitators from the perspective of both patients and providers. Objective This paper aimed to present the findings of a qualitative study conducted to inform the development and implementation of a support tool for adolescent tobacco screening and counseling in 3 pediatric clinics in North Florida. The primary objective of the study was to test and collect information needed to refine a tablet-based support tool with input from patients and providers in the study clinics. Methods A tablet prototype was designed to collect information from adolescents on tobacco susceptibility and use before their well-care visit and to present tobacco prevention videos based on their responses. Information collected from adolescents by the support tool would be available to providers during the visit to facilitate and streamline tobacco use assessment and counseling components of well-care. Focus groups with providers and staff from 3 pediatric clinics (n=24) identified barriers and facilitators to implementation of the support tool. In-depth interviews with racially and ethnically diverse adolescent patients who screened as susceptible to tobacco use (n=16) focused on acceptability and usability of the tool. All focus groups and interviews were audio-recorded and transcribed for team-based coding using thematic analysis. Results Privacy and confidentiality of information was a salient theme. Both groups expressed concerns that the tool’s audio and visual components would impede privacy and that parents may read their child’s responses or exert control over the process. Nearly all adolescents stated they would be comfortable with the option to complete the tool at home via a Web portal. Most adolescents stated they would feel comfortable discussing tobacco with their doctor. Adolescent interviews elicited 3 emergent themes that added context to perspectives on confidentiality and had practical implications for implementation: (1) purity : an expressed lack of concern for confidentiality among adolescents with no reported history of tobacco use; (2) steadfast honesty : a commitment to being honest with parents and providers about tobacco use, regardless of the situation; and (3) indifference : a perceived lack of relevance of confidentiality, based on the premise that others will “find out anyway” if adolescents are using tobacco. Conclusions This study informed several modifications to the intervention to address confidentiality and introduce efficiency to well-care visits. The support tool was...

Human-Computer Interaction, Ethics, and Biomedical Informatics

“…The importance of considering the perspectives of distinct patient populations is seen in a range of efforts, including preliminary inquiries into potential designs for managing opioid abuse risk in military settings [58], teen smoking prevention tools [59], electronic system decision aids for depression [60], apps for menstrual tracking [61], personal health records for young adults leaving foster care [62], and identification of research areas for informatics support of families experiencing challenges of hospitalization and subsequent care [63]. A proposed clinical trial of the potential use of computer-delivered advice for encouraging physical activity in underserved populations [64] illustrates issues at the intersection of trust, inclusivity, and HCI, as different groups may have different responses to these automated agents.…”