Black and Hispanic populations perceive their skin cancer risk to be low and are less likely to use sun protection strategies. We conducted formative research to understand knowledge, awareness, beliefs, and behaviors among these groups. In 2017, eighteen focus groups were conducted with black and Hispanic respondents(18–44 years) in four US cities. Groups were segmented by participant characteristics associated with elevated or lower risk for skin cancer, by race/ethnicity, gender, and age. A professional moderator followed a semi-structured discussion guide, and focus group transcripts were analyzed using conventional content analysis and NVIVO 11 Software. Most participants perceived themselves to be at low skin cancer risk due to their “darker skin tone” and/or “lack of family history.” Skin cancer signs and symptoms were more inconsistently reported by blacks than Hispanics. Few participants reported regular sun protection behaviors. Those who did used sunscreen, wore protective clothing, and had elevated risk based on sun sensitivity or UV exposure. While most participants recalled family discussions (as youth) about sunscreen and sun protection, the understood intent was to warn against “further skin darkening” or to “prevent aging,” not to reduce sun burns or skin cancer risk. Tanning bed use was low across all segments, especially among black respondents. Tailored skin cancer prevention campaigns need to address misperceptions about risks and benefits of skin cancer prevention behaviors among black and Hispanic populations. Families, peer groups, and healthcare providers need to be engaged in the creation of educational interventions and messaging efforts that target these populations.
BackgroundEvidence-based preventive services for early detection of cancer and other health conditions offer profound health benefits, yet Americans receive only half of indicated services. Policy initiatives promote the adoption of information technologies to engage patients in care. We developed a theory-driven interactive preventive health record (IPHR) to engage patients in health promotion. The model defines five levels of functionality: (1) collecting patient information, (2) integrating with electronic health records (EHRs), (3) translating information into lay language, (4) providing individualized, guideline-based clinical recommendations, and (5) facilitating patient action. It is hypothesized that personal health records (PHRs) with these higher levels of functionality will inform and activate patients in ways that simpler PHRs cannot. However, realizing this vision requires both technological advances and effective implementation based upon clinician and practice engagement.Methods/designWe are starting a two-phase, mixed-method trial to evaluate whether the IPHR is scalable across a large number of practices and how its uptake differs for minority and disadvantaged patients. In phase 1, 40 practices from three practice-based research networks will be randomized to add IPHR functionality to their PHR versus continue to use their existing PHR. Throughout the study, we will engage intervention practices to locally tailor IPHR content and learn how to integrate new functions into their practice workflow. In phase 2, the IPHR to all nonintervention practices to observe whether the IPHR can be implemented more broadly (Scalability). Phase 1 will feature an implementation assessment in intervention practices, based on the RE-AIM model, to measure Reach (creation of IPHR accounts by patients), Adoption (practice decision to use the IPHR), Implementation (consistency, fidelity, barriers, and facilitators of use), and Maintenance (sustained use). The incremental effect of the IPHR on receipt of cancer screening tests and shared decision-making compared to traditional PHRs will assess Effectiveness. In phase 2, we will assess similar outcomes as phase 1 except for effectiveness.DiscussionThis study will yield information about the effectiveness of new health information technologies designed to actively engage patients in their care as well as information about how to effectively implement and disseminate PHRs by engaging clinicians.Trial registrationClinicalTrials.gov: NCT02138448Electronic supplementary materialThe online version of this article (doi:10.1186/s13012-014-0181-1) contains supplementary material, which is available to authorized users.
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