Engaging Disadvantaged Patients in Sharing Patient-Generated Health Data and Patient-Reported Outcomes through Health Information Technology (Colorado)

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Patient engagement is critically important in achieving effective chronic disease management, especially for disadvantaged patients who are disproportionately impacted by them. A key component of self-management is the ability for patients to record and monitor their progress toward management goals. Obtaining patient-generated health data (PGHD) and patient-reported outcomes (PROs) from engaged patients can help improve disease management. While health information technology (IT) solutions have been shown to improve self-management, adoption and use of them among disadvantaged patients is lower than among higher-income populations. In addition, there is a pervasive belief that these patients are unable to use these technologies effectively, despite their interest in such patient-centered solutions.

This mixed methods study will test the hypothesis that low-income, disadvantaged patients both can and will provide high quality PGHD and PROs through commercial off-the-shelf (COTS) health IT solutions, such as mobile phone applications and fitness trackers; and that these data can be integrated into clinical systems and used to improve healthcare quality and delivery.

The specific aims of the project are as follows:

  • Assess the needs and preferences of disadvantaged patients and the primary care providers who care for them regarding the use of health IT to collect PGHD and PROs. 
  • Demonstrate the feasibility of PGHD and PROs collection through COTS health IT solutions in a randomized controlled trial of a patient-centered intervention for weight management. 
  • Create an ontology mapping tool and a set of interoperability resources that can be used to support integration of PGHD and PROs into electronic health records (EHRs) and other clinical information systems. 

Investigators will conduct interviews with providers and focus groups with patients from nine federally qualified health centers. Information will be collected on the needs and preferences for commercial health IT-based PGHD and PROs reporting, including perceived self-efficacy when doing so, and an assessment of gaps in current systems. A randomized controlled study will be conducted with overweight or obese patients. Study participants will be enrolled in a 16-week program where they will receive regular health promotion messaging about (1) food, nutrition, and diet; and (2) exercise and physical activity. Intervention patients will be asked to track PGHD elements related to weight management through a mobile health application or fitness tracker, and to share that information with the research team. Finally, a set of Fast Healthcare Interoperability Resource (FHIR) resources will be created that can be used to facilitate transfer of data between mobile health IT solutions, EHRs, and other clinical information systems.

This work can help circumvent barriers to healthcare access, improve chronic disease management for disadvantaged patients, improve communication and knowledge sharing between patients and providers, support the collection and integration of actionable health data into clinical systems and big data infrastructures, and offers the potential for creating better healthcare interventions that utilize technology-based means of delivery.

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