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Engaging Disadvantaged Patients in Sharing Patient-Generated Health Data and Patient-Reported Outcomes Through Health Information Technology

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Commercial off-the-shelf technology, including mobile phones and fitness trackers, can successfully engage disadvantaged patients to collect patient-generated health data and patient-reported outcomes that can be integrated into electronic health records to improve chronic disease care planning during clinical visits.

Project Details -
Completed

Patient engagement is critically important in achieving good chronic disease management. Obtaining patient-generated health data (PGHD) and patient-reported outcomes (PROs) from engaged patients can help improve chronic disease management in primary care. This is especially important for disadvantaged patients who are disproportionately affected by chronic disease. While health information technology (IT) solutions have been shown to improve chronic disease self-management, adoption and use of costly, specialized technologies among disadvantaged patients is lower than among higher-income populations. In contrast, commercial off-the-shelf (COTS) technologies, such as mobile phones and fitness trackers, are more accessible to and widely adopted by disadvantaged patients.

This study tested the hypothesis that low-income, disadvantaged patients both can and will provide high-quality PGHD and PROs through these COTS health IT solutions and that these data can be integrated into clinical systems and used to improve healthcare quality and delivery.

The specific aims of the research were 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. 

Researchers employed a sequential integrated mixed methods approach with three phases: 1) a qualitative formative phase; 2) a randomized controlled trial to assess PGHD and PROs data collection feasibility through COTS health IT solutions; and 3) development of a data model, terminology map, and set of Fast Healthcare Interoperability Resources to facilitate future data integration into clinical information systems. Having PGHD and PROs readily available to providers through integration into clinical workflows and EHRs makes these data actionable for use in care planning during clinical visits, thus improving the quality of care. The results of this study suggest that appropriate mobile technology can be used to increase engagement among disadvantaged patients, with the potential to improve chronic disease management.

Engaging Disadvantaged Patients by Using Mobile Technology to Share Patient Reported Outcomes

Engaging Disadvantaged Patients by Using Mobile Technology to Share Patient Reported Outcomes

Commercial off-the-shelf technology, including mobile phones, can successfully engage disadvantaged patients to collect patient-generated health data and patient-reported outcomes that can be integrated into electronic health records to improve chronic disease care planning during clinical visits.

Principal Investigator: Moore, Susan Louise
Organization: Denver Health and Hospital Authority
Research Profile: Engaging Disadvantaged Patients in Sharing Patient-Generated Health Data and Patient-Reported Outcomes Through Health Information Technology
Funded Amount: $298,267

Reducing gaps in care with smartphones

One of the fastest growing areas in healthcare—mobile and digital health—is transforming the way healthcare is delivered. Populations with higher health disparities and lower access to care usually have a higher burden of chronic diseases and worse outcomes due to fewer resources. And while there are effective tools to manage and track chronic conditions, there is a common misconception that disadvantaged populations are too tech illiterate, disinterested, or generally not comfortable enough with mobile applications to use them for healthcare. Dr. Susan Moore and her Denver Health-based research team recognized this misjudgment, noting “it is essential that we do not leave certain patients behind as we advance in the mobile and digital health field.” They sought to explore the suitability of solutions that currently exist in the marketspace and can potentially be used by all patients. Reducing the disparity gap in mobile and digital applications’ use will give minority and other medically underserved groups greater self-advocacy and better quality of care.

The value that comes from digital health solutions is and can be for everyone. Implementation is feasible, we can and we must do this for the whole population.”
- Dr. Moore

Accessible for all

Dr. Moore and her research team demonstrated that it is possible to use commercial off-the-shelf (COTS) technology to collect information about a person's health, which can then be shared with their provider to help inform care delivery, care management, and shared decision making around chronic disease management. The team assessed the needs of disadvantaged patients through focus groups with 55 patients and showed the feasibility of using COTS technology in a randomized controlled trial with 300 patients using a patient-centered weight management intervention. They then developed a data model, terminology map, and set of Fast Healthcare Interoperability Resources (FHIR)® to facilitate future data integration into providers’ clinical information systems. The goal of this research was to take existing and accessible technologies that are available to traditionally disadvantaged populations to demonstrate that patients could input and share information seamlessly in a structured fashion for providers to access.

Trusting providers and engaging with tech

Study findings revealed that patients trusted providers to recommend technology that can track their personal health data. Providers preferred to receive a summary of a patient’s collected data before a visit instead of receiving an information stream over time. Patient engagement increased overall at the end of the study. Dr. Moore and the research team found that COTS technology can be used to engage disadvantaged populations and believe this can help make strides to improve chronic disease management.