Abstract
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.
Highlights
Evidence-based preventive services for early detection of cancer and other health conditions offer profound health benefits, yet Americans receive only half of indicated services
Less than half of adults are up-to-date with clinical preventive services generally [1,6], and the gap is even more pronounced among low-income Americans and racial and ethnic minorities [7]
Our findings demonstrate that the interactive preventive health record (IPHR) is technically feasible, increases delivery of preventive services for patients enrolled in a controlled trial, and can be fielded to an entire primary care population
Summary
The second stage of EHR Meaningful Use will require clinicians to engage 50% of their patients online through. A core element of our study design is to engage key stakeholders throughout the research project as co-investigators—clinicians, patients, and experts—using a variety of robust methods to ensure that IPHR content meets users’ needs, implementation is integrated into practice workflow, outcomes assessed are meaningful for users, interpretation of findings is guided by users’ experiences, and the voice of our users is incorporated into dissemination activities. We plan to use several strategies to mitigate this limitation such as standardizing study materials, using established PBRN infrastructure, building on prior practice relationships, developing methods to promote virtual participation in learning collaboratives (e.g., use of video meetings), and sharing experiences between the three PBRNs. PHRs hold great potential to improve patient education, promote shared decision-making, facilitate more in-depth conversations, and generally engage patients in their care.
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