Reporting Patient Generated Health Data and Patient Reported Outcomes With Health Information Technology

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