Engaging Patients in Decision-Making and Behavior Change to Promote Prevention.

Effectively engaging patients in their care is essential to improve health outcomes, improve satisfaction with the care experience, reduce costs, and even benefit the clinician experience. This chapter will address the topic of patient engagement directly and review the relationships between health literacy and patient engagement. While there are many ways to define patient and family engagement, this chapter will consider engagement as "patients, families, their representatives, and health professionals working in active partnership at various levels across the health care system - direct care, organizational design and governance, and policy making - to improve health and health care [1]." We will specifically focus on the patient engagement and health literacy needs for three scenarios (1) decision-making, (2) health behavior change, and (3) chronic disease management; we will include the theoretical underpinnings of engagement, the systems required to better support patient engagement, how social determinants of health influence patient engagement, and practical examples to demonstrate approaches to better engage patients in their health and wellbeing. We will close by describing the future of patient engagement, which extends beyond the traditional domains of decision-making and self-care to describe how patient engagement can influence the design of the healthcare delivery system; local, state, and national health policies; and future research relevant to the needs and experiences of patients.

Designing User-Centric Patient Portals: Clinician and Patients' Uses and Gratifications.

BACKGROUND: Legislation mandates that clinicians make patients' medical information available digitally. This has resulted in hurriedly installing patient portals that do not fully meet the needs of patients or clinicians. This study examined a specific portal, MyPreventiveCare (MPC), a patient-centered portal designed to promote preventive care to consumers, to elicit recommendations from patients and clinicians about how it could be more beneficial by uncovering their uses and gratifications (U&G). MATERIALS AND METHODS: In-depth interviews with 31 patients and two clinician focus groups were conducted. Multiple methods were utilized, such as grounded theory coding to develop themes and content analysis to classify responses according to the U&G framework. RESULTS: Four main categories emerged that users desire to be included in health portals: integration with technology (27%), coordination of care (27%), incorporation of lifestyle (26%), and increased control (20%). Additional analysis revealed that health portals are mainly utilized to fulfill cognitive and affective needs, with over 80% of recommendations related to the U&G categories of cognitive and affective needs. Cognitive (60%), affective (21%), social integrative (10%), personal integrative (9%), and tension release (0%). CONCLUSIONS: Portals will continue to evolve and become important health communication tools if they address the user's perspective and are inclusive of new technological advances. Specifically, portals must become more user centric and incorporate aspects of the patients' lifestyle and integrate health information technology.

Measuring Health Literacy Levels of a Patient Portal Using the CDC's Clear Communication Index.

Once promised to revolutionize health care, patient portals have yet to fully achieve their potential of improving communication between patients and clinicians. In fact, their use can be detrimental to many consumers due to their limited literacy and numeracy skills. This study demonstrates how applying the Centers for Disease Control and Prevention's Clear Communication Index to a patient portal can be used to identify opportunities for better patient communication and engagement. The Clear Communication Index contains 20 scored items grounded in communication science to enhance patients' understanding of health information. The Index was applied to one portal used by over 80,000 patients in 12 primary care practices: MyPreventiveCare. This portal was selected because of its ability to personalize preventive and chronic care information by internally using content featuring health literacy principles and linking patients' externally to trusted materials. Thirty-seven frequently visited portal pages (17 internal and 20 external) were evaluated based on the Index's four main variables. The overall score for the portal was 72%, which falls below the 90% threshold to be considered clear communication. Internal content scored higher than external (75% vs. 69%). Specific changes to improve the score include simpler language, more specific examples, and clearer numerical explanations.

Applying Multiple Methods to Comprehensively Evaluate a Patient Portal's Effectiveness to Convey Information to Patients.

BACKGROUND: Patient portals have yet to achieve their full potential for enhancing health communication and improving health outcomes. Although the Patient Protection and Affordable Care Act in the United States mandates the utilization of patient portals, and usage continues to rise, their impact has not been as profound as anticipated. OBJECTIVE: The objective of our case study was to evaluate how well portals convey information to patients. To demonstrate how multiple methodologies could be used to evaluate and improve the design of patient-centered portals, we conducted an in-depth evaluation of an exemplar patient-centered portal designed to promote preventive care to consumers. METHODS: We used 31 critical incident patient interviews, 2 clinician focus groups, and a thematic content analysis to understand patients' and clinicians' perspectives, as well as theoretical understandings of the portal's use. RESULTS: We gathered over 140 critical incidents, 71.8% (102/142) negative and 28.2% (40/142) positive. Positive incident categories were (1) instant medical information access, (2) clear health information, and (3) patient vigilance. Negative incident categories were (1) standardized content, (2) desire for direct communication, (3) website functionality, and (4) difficulty interpreting laboratory data. Thematic analysis of the portal's immediacy resulted in high scores in the attributes enhances understanding (18/23, 78%), personalization (18/24, 75%), and motivates behavior (17/24, 71%), but low levels of interactivity (7/24, 29%) and engagement (2/24, 8%). Two overarching themes emerged to guide portal refinements: (1) communication can be improved with directness and interactivity and (2) perceived personalization must be greater to engage patients. CONCLUSIONS: Results suggest that simple modifications, such as increased interactivity and personalized messages, can make portals customized, robust, easily accessible, and trusted information sources.

MyPreventiveCare: implementation and dissemination of an interactive preventive health record in three practice-based research networks serving disadvantaged patients--a randomized cluster trial.

BACKGROUND: 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. 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/DESIGN: We 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. DISCUSSION: This 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 REGISTRATION: ClinicalTrials.gov: NCT02138448.