Patient-Driven Data Collection and Usage in Chronic Disease Management

Project Summary

For chronic conditions like hypertension, patients must take an active role in the management of their illness including blood pressure monitoring, evaluating symptoms, tracking medications, changing and monitoring health behaviors, and relaying information to often multiple care providers for coordinated care. Currently, this is poorly done resulting in increased preventable morbidity and mortality. There is an opportunity to advance the science of patient-centered measurement by studying patient-driven data collection, feedback mechanisms, and integration in hypertension clinical practice.

This study identified a process to understand patient-driven priorities on measurement for chronic hypertension management.

Project Findings

We found that conducting focus groups including participants who differed in age and sex, in an iterative fashion, we could identify patient priorities in patient-centered measurements, and how to incorporate measures into their care.

The patient participants were most interested in monitoring their medications, side effects, and their blood pressure.
The patients were interested in monitoring other aspects of their health as well, including activity levels.
The patients had significant variability in frequency and type of monitoring and this varied by individual and changing health circumstance.
The patients were most interested in measuring and collecting data that would help change their personal management (for example, if they walked more, would their blood pressure drop) or their care plan with the physician.
- For example, they preferred to measure side effects and use of medications with reductions in blood pressure to determine if medications should be continued or titrated.
The patients also wanted to receive automated feedback, tailoring of education materials and easy, simplified graphical displays of their data.

We found that an iterative cycle of reviewing findings with patients, physicians, and application designers led to better measurement tools for the patient-provider encounter.

Based on these insights, we were able to develop patient-driven features for a novel hypertension digital health application with our technology partner, Cambian.

These features include: