Reporting Patient Generated Health Data and Patient Reported Outcomes With Health Information Technology
Reporting Patient Generated Health Data and Patient Reported Outcomes With Health Information Technology
This study will assess the feasibility of using patient-centered, commercial off-the-shelf
 (COTS) health information technology (IT) solutions to collect patient generated health data
 (PGHD) and patient-reported outcomes (PROs) from diverse, low-income disadvantaged
 populations. These data will then be mapped and reported in a way that will allow them to be
 made actionable and used to improve health care quality and delivery. The data mapping will
 be designed for data collection through technology such as mobile apps and wearables, and
 will be intended to support integration into interoperable electronic health records (EHRs),
 clinical information systems, and big data infrastructures.
Patient engagement is particularly critical to achieving good chronic disease
 self-management. This is especially important for disadvantaged patients, who are
 disproportionately affected by chronic disease. A key component of chronic disease
 self-management is the ability for patients to record and monitor their ongoing performance
 on indicator measures. While health 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, COTS technologies such
 as mobile phones are more accessible to and widely adopted by disadvantaged patients, thus
 bridging the gap of the digital divide.

 The central research hypothesis posits that 1) low-income, disadvantaged patients both can
 and will provide high quality PGHD and PROs through COTS-based health IT solutions, and 2)
 these data can be integrated into clinical systems and used to improve health care quality
 and delivery. PGHD can be collected through patient interaction with COTS health IT solutions
 such as mobile health apps and fitness trackers. PROs can be collected via patient response
 to questionnaire-based PROs measures, or PROMs. These data can be transmitted to clinical
 information systems, integrated into clinical workflows and used by providers to improve
 health care quality and delivery. Using a sequential integrated mixed-methods approach, we
 propose to test the central hypothesis through three specific aims, as follows:

 Aim 1: To assess the needs and preferences of disadvantaged patients and safety net health
 care providers regarding the use of health IT for communicating PGHD and PROs.

 Aim 1 Research Questions: What specific features in COTS solutions meet the needs and
 preferences of disadvantaged patients for communicating PGHD and PROs to their providers?
 What PGHD and PROs are deemed most important by providers and patients for improving health
 care and health outcomes?

 Answering these questions will inform health IT solution selection, design, usability, and
 utility; assist with prioritizing PGHD and PROs collection by data element and measure type;
 and identify potential discrepancies between patients' and providers' perceptions of PGHD and
 PROs importance.

 Aim 2: To demonstrate the feasibility of PGHD and PROs collection through COTS health IT
 solutions in a patient-centered pilot intervention for weight management among disadvantaged
 patients.

 Aim 2 Hypothesis: Providing PGHD and PROs through COTS solutions will improve engagement
 among disadvantaged patients. Secondary outcomes include improving key health indicators
 (e.g., weight, physical activity) and PROMs (e.g., quality of life, mental health symptoms).

 Weight management is important in delaying, averting, and reducing the effects of multiple
 chronic diseases, including diabetes, hypertension, and obesity. A weight management-related
 intervention also serves as an effective test of PGHD and PROMs collection, due to the
 existence of numerous COTS solutions which use different methods for tracking common data
 elements related to weight, physical activity, and fitness.

 Aim 3: To create an ontology mapping and set of interoperability resources which can be used
 to support integration of PGHD and PRO into clinical information systems.

 Aim 3 Hypothesis: PGHD and PROs can be characterized by distinct types, elements, and
 structures which, once described, may be modeled and mapped to existing vocabularies for
 health data management.

 In order to make PGHD and PROs actionable, these data must be integrated into clinical
 information systems such as electronic health records (EHRs) where it can be used by
 clinicians in their practice. Creating a "translation" by matching PGHD and PROs data
 elements to comparable ones in existing clinical vocabularies will provide a tool to support
 future data integration into the EHR. Creating a resource set which can be used with multiple
 EHRs will improve the generalizability and broad usability of the ontology mapping tool.
Inclusion Criteria:

 -  BMI of 25.0-39.9,

 -  Has a smartphone

 -  English or Spanish as primary language

 -  assessed at "medium health risk" according a risk stratification algorithm based on
 clinical criteria, diagnostic scoring, and health care utilization

 Exclusion Criteria:

 -  Does not meet inclusion criteria