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CompletedNCT03386773Updated Sep 26, 2022Results posted

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

An interventional study of 16-week program and Patient generated health data in Obesity, sponsored by Denver Health and Hospital Authority. Completed at 1 site in United States. Open to participants aged 18 Years and older. Per ClinicalTrials.gov, last updated 2022-09-26.

Sponsored by Denver Health and Hospital Authority · Not applicable, Interventional, and Health services research

Phase
Not applicable
Study type
Interventional
Enrollment
300
Allocation
Randomized
Ages
18 Years and older
Sex
All
01

Study summary

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.

Read the detailed description

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.

02

Conditions studied

  • Obesity

Keywords

  • patient generated health data
  • patient reported outcome measures
  • health information technology
  • mobile health
  • consumer health informatics
03

Who can participate

Ages eligible
18 Years and older
Sexes eligible
All
Accepts healthy volunteers
No

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

Exclusion Criteria:

  • Does not meet inclusion criteria
04

Study design

Phase
Not applicable
Primary purpose
Health services research
Allocation
Randomized
Intervention model
Parallel assignment
Masking
None (open label)
Enrollment
300 participants (actual)

Study arms

  • Experimental
    Intervention

    Intervention patients will engage in a 16-week program where they will receive regular health promotion messaging about (a) food, nutrition, and diet; and (b) exercise and physical activity. Intervention patients will be asked to track patient generated health data (PGHD) elements related to weight management through a mobile health app loaded on their phones and/or through using a fitness tracker, depending on patient preference, and to share that information with the research team. Patient-reported outcomes (PRO) measures will be collected pre-and-post-intervention. Intervention patients will also be asked to provide answers to patient-reported outcomes measures on a weekly basis.

    Behavioral: 16-week program · Behavioral: Patient generated health data

  • Active comparator
    Control

    Control patients will engage in a 16-week program where they will receive regular health promotion messaging about (a) food, nutrition, and diet; and (b) exercise and physical activity. Patient-reported outcomes measures will be collected pre-and-post-intervention.

    Behavioral: 16-week program

Interventions

  • Behavioral16-week program

    16-week program where patients will receive regular health promotion messaging about (a) food, nutrition, and diet; and (b) exercise and physical activity.

  • BehavioralPatient generated health data

    Intervention patients will be asked to track patient generated health data and patient reported outcomes. PGHD elements related to weight management will be collected through a mobile health app loaded on their phones and/or through using a fitness tracker, depending on patient preference, and to share that information with the research team. Patient-reported outcomes (PRO) measures will be collected pre-and-post-intervention. Intervention patients will also be asked to provide answers to patient-reported outcomes measures on a weekly basis.

05

What researchers measure

Primary outcomes

  1. Patient Engagement (Patient Activation Measure)

    Patient Engagement will be measured by participant performance on the Patient Activation Measurement (PAM)-13 tool. This validated instrument helps to show patients' motivation for being an active participant in managing their health. Each of the 13 items on the tool is rated on a four-point per-item scale, then converted to a total PAM score. The total PAM score is transformed into a scale score with values that range from 0 to 100 based on the calibration tables for the instrument, with higher numbers reflecting better scores and indicative of increased engagement. The scale score is reported here.

    Time frame: Baseline, Post-Intervention

Secondary outcomes

  1. Weight Loss

    Change in absolute percent weight

    Time frame: 16 weeks

  2. Healthy Days HRQOL-4 Measure

    Healthy days will be measured by participant performance on the Health Related Quality of Life Scores (HRQOL)-4 questionnaire. This questionnaire is scored based on participant reported number of days experiencing poor physical or mental health. The scale ranges from 1-30, with lower scores being better in that they indicate fewer poor health days.

    Time frame: 16 weeks

  3. Healthy Days Symptoms Measure

    Patient Reported Outcomes Measures, Healthy Days Symptoms Score - lower scores are better, save for Energy where a higher score is better. Minimum value is 0, maximum value is 30.

    Time frame: 16 weeks

  4. Number of Patients Who Responded to Text Messages

    Text message response to prompts for weight data.

    Time frame: 16 weeks

06

Results

Posted Sep 26, 2022

Participant flow

Participant flow — Overall Study
MilestoneInterventionControl
Started150150
Completed123115
Not completed2735
Withdrew: Lost to follow-up2433
Withdrew: Withdrawal by subject32

Outcome measures

PrimaryPatient Engagement (Patient Activation Measure)

Patient Engagement will be measured by participant performance on the Patient Activation Measurement (PAM)-13 tool. This validated instrument helps to show patients' motivation for being an active participant in managing their health. Each of the 13 items on the tool is rated on a four-point per-item scale, then converted to a total PAM score. The total PAM score is transformed into a scale score with values that range from 0 to 100 based on the calibration tables for the instrument, with higher numbers reflecting better scores and indicative of increased engagement. The scale score is reported here.

Time frame:
Baseline, Post-Intervention
Reported as:
Mean · score on a scale
Patient Engagement (Patient Activation Measure)
score on a scaleInterventionControl
Baseline70.2 ± 17.967.6 ± 16.9
Follow-Up72.7 ± 18.970.3 ± 20.1
SecondaryWeight Loss

Change in absolute percent weight

Time frame:
16 weeks
Reported as:
Mean · percent change in weight
Weight Loss
percent change in weightInterventionControl
Weight Loss0.65 ± 5-0.29 ± 8
SecondaryHealthy Days HRQOL-4 Measure

Healthy days will be measured by participant performance on the Health Related Quality of Life Scores (HRQOL)-4 questionnaire. This questionnaire is scored based on participant reported number of days experiencing poor physical or mental health. The scale ranges from 1-30, with lower scores being better in that they indicate fewer poor health days.

Time frame:
16 weeks
Reported as:
Mean · score on a scale
Healthy Days HRQOL-4 Measure
score on a scaleInterventionControl
Healthy Days HRQOL-4 Measure18.83 ± 11.6617.93 ± 11.71
SecondaryHealthy Days Symptoms Measure

Patient Reported Outcomes Measures, Healthy Days Symptoms Score - lower scores are better, save for Energy where a higher score is better. Minimum value is 0, maximum value is 30.

Time frame:
16 weeks
Reported as:
Mean · score on a scale
Healthy Days Symptoms Measure
score on a scaleInterventionControl
Pain3.38 ± 6.525.51 ± 9.20
Sad3.11 ± 5.164.15 ± 7.02
Anxious4.51 ± 6.775.65 ± 7.82
Sleep9.23 ± 10.159.98 ± 10.45
Energy18.28 ± 10.1215.35 ± 10.55
SecondaryNumber of Patients Who Responded to Text Messages

Text message response to prompts for weight data.

Time frame:
16 weeks
Reported as:
Count of participants · Participants
Number of Patients Who Responded to Text Messages
ParticipantsInterventionControl
Responded less than prompted10493
Responded as many times as prompted73
Responded more than prompted48
Did not respond3546

Adverse events

Collected over 16 weeks (duration of each participant's participation). Non-serious events are listed at a 0% frequency threshold.

Adverse event summary by group
GroupDeathsSeriousOther
Intervention0/150 (0%)0/150 (0%)0/150 (0%)
Control0/150 (0%)0/150 (0%)0/150 (0%)

Baseline characteristics

Age, Continuous
Age, Continuous(years)InterventionControlTotal
Mean45.76 ± 13.9644.30 ± 14.1445.12 ± 13.85
Sex/Gender, Customized
Sex/Gender, Customized(Participants)InterventionControlTotal
Female114107221
Male354277
Non-binary101
Unknown/Missing011
Ethnicity (NIH/OMB)
Ethnicity (NIH/OMB)(Participants)InterventionControlTotal
Hispanic or Latino6888156
Not Hispanic or Latino513586
Unknown or Not Reported312758
Race (NIH/OMB)
Race (NIH/OMB)(Participants)InterventionControlTotal
American Indian or Alaska Native000
Asian000
Native Hawaiian or Other Pacific Islander000
Black or African American181634
White97110207
More than one race9615
Unknown or Not Reported261844
Region of Enrollment
Region of Enrollment(participants)InterventionControlTotal
United States150150300
Language
Language(Participants)InterventionControlTotal
English9597192
Spanish5553108
07

Study locations

1 site
  • Denver Health and Hospital Authority
    Denver, Colorado 80204, United States
08

References and documents

Study documents

  • Protocol and statistical analysis plan · Oct 12, 2016
  • Informed consent form · Nov 12, 2018

Documents are hosted by the registry — open the source record to download them.

Individual participant data

Plan to share: No — An enhanced entity-relationship (EER) model will be created for the PGHD elements and PROMs used in the study. Knowledge representation techniques will be utilized to describe the model in ontological terms. Concepts from the UMLS Metathesaurus will be used to create a mapping to the SNOMED-CT clinical vocabulary. Modeled information will be structured using Fast Healthcare Interoperability Resource (FHIR) standards and packaged as a set of FHIR resources. Each FHIR resource includes: 1) common definitions and representations; 2) a common metadata set; and 3) a human-readable part to aid user interpretation. Products will include a detailed EER schema, an interface and requirements assessment, an ontology, and a list of UMLS concepts and SNOMED-CT terms used in ontology mapping.

09

Registry details

Key details

Study ID
NCT03386773
Lead sponsor
Denver Health and Hospital Authority
Collaborators
Agency for Healthcare Research and Quality (AHRQ)
Responsible party
Susan Moore (Associate Director, mHealth Impact Lab, Colorado School of Public Health) — Principal investigator
First posted
Dec 29, 2017
Start date
Nov 2, 2018
Primary completion
Jul 19, 2019
Completion
Aug 31, 2020
Results posted
Sep 26, 2022
Last update
Sep 26, 2022

Study contacts

Susan L Moore, PhD, MSPH
principal investigator · Colorado School of Public Health

Oversight

Data monitoring committee
No
FDA-regulated drug
No
FDA-regulated device
No
View the source record on ClinicalTrials.gov ↗

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