Designing a patient-centered personal health record to promote preventive care

Abstract

Background: Evidence-based preventive services offer profound health benefits, yet Americans receive only half of indicated care. A variety of government and specialty society policy initiatives are promoting the adoption of information technologies to engage patients in their care, such as personal health records, but current systems may not utilize the technology's full potential.

Methods: Using a previously described model to make information technology more patient-centered, we developed an interactive preventive health record (IPHR) designed to more deeply engage patients in preventive care and health promotion. We recruited 14 primary care practices to promote the IPHR to all adult patients and sought practice and patient input in designing the IPHR to ensure its usability, salience, and generalizability. The input involved patient usability tests, practice workflow observations, learning collaboratives, and patient feedback. Use of the IPHR was measured using practice appointment and IPHR databases.

Results: The IPHR that emerged from this process generates tailored patient recommendations based on guidelines from the U.S. Preventive Services Task Force and other organizations. It extracts clinical data from the practices' electronic medical record and obtains health risk assessment information from patients. Clinical content is translated and explained in lay language. Recommendations review the benefits and uncertainties of services and possible actions for patients and clinicians. Embedded in recommendations are self management tools, risk calculators, decision aids, and community resources--selected to match patient's clinical circumstances. Within six months, practices had encouraged 14.4% of patients to use the IPHR (ranging from 1.5% to 28.3% across the 14 practices). Practices successfully incorporated the IPHR into workflow, using it to prepare patients for visits, augment health behavior counseling, explain test results, automatically issue patient reminders for overdue services, prompt clinicians about needed services, and formulate personalized prevention plans.

Conclusions: The IPHR demonstrates that a patient-centered personal health record that interfaces with the electronic medical record can give patients a high level of individualized guidance and be successfully adopted by busy primary care practices. Further study and refinement are necessary to make information systems even more patient-centered and to demonstrate their impact on care.

Trial registration: Clinicaltrials.gov identifier: NCT00589173.

Figures

Figure 1

Characteristics of the Primary Care Practices Participating in the Efficacy, Adoption, and Dissemination Trials. E = Efficacy trial, A = Adoption Trial, D = Dissemination trial.

Figure 2

Preventive Services Addressed by the IPHR.

Figure 3

Minimum Clinical Dataset Required by IPHR to Generate Personalized Prevention Recommendations. The above elements are necessary to determine applicability of U.S. Preventive Services Task Force recommendations. CT = computed tomography, HDL = high-density lipoproteins, LDL = low-density lipoproteins, PSA = prostate specific antigen.

Figure 4

The IPHR General Summary Page. After completing the health risk assessment patients are directed to the IPHR general summary page. This page is intended to both provide patients an overview of how they are doing and allow them to access detailed personalized messages about any prevention top by simply clicking on the blue hyperlinked topics.

Figure 5

Detailed Personal Prevention. This is an example of a patient's detailed personal message about cholesterol. Content is modeled after HealthFinder.gov and framed to promote patient action. Specific elements include: (1) An explicit guideline-based recommendation presented in patient language; (2) Content is personalized for each patient, both summarizing the patient's individual profile and highlighting patient characteristics to make the content more relevant; (3) Positive aspects are emphasized to make the message motivational; (4) Patients are provided a personalized library of non-commercial, evidence-based, and patient-centered tools to guide their next steps and manage their preventive care; (5) Patients can view all available past values, which are graphically displayed and trended to demonstrate any changes; and (6) All content is framed to link the patient back to their personal clinician. For preventive services with a balance of risks and benefits, messages also contain (a) a description of the risks of the preventive services and (b) information about how to decide if the preventive service is appropriate for an individual.

Figure 6

Patient and Practice Use of the IPHR During the First Six Months of Availability.