New Advances in Collecting and Using Patient-Reported Outcome Data

By Gopal Khanna, MBA, Director of AHRQ
Twitter: @AHRQNews

The time patients spend with their healthcare providers is limited. Often missing from the clinical encounter is information about how people fare as they go about their daily lives. It has been challenging to capture and share this reservoir of information—known as Patient-Reported Outcome (PRO) data—due to lack of standards and easy-to-use data collection tools.

PRO data consist of any information on health status that comes directly from the patient, without interpretation by a clinician. These data yield important insights into patients’ function, symptom burden, health behaviors, and quality of life. The collection of standardized PRO data is important, because standardized data can be shared and integrated into different electronic health record (EHR) systems more easily. This can improve patients’ engagement with their care and ultimately the quality of care.

So it’s with genuine excitement that I’m able to announce AHRQ’s release of the open source code used to develop the PRISM™ app—a mobile app that guides patients through questions about their health status and enables PRO data to be exported in a standardized format, so patients’ health status can be easily shared with providers during the clinical visit.

You may have read about the PRISM app before—an invention derived from a unique, multi-stakeholder collaborative to foster innovation by bringing together government, delivery systems, innovators, and academia. It was the winning entrant in AHRQ’s Step Up App Challenge, the first of a series of competitions sponsored by the Agency to encourage the development of innovative technologies for providing patient-centered, 21st-century healthcare. The Step Up App Challenge aligns with AHRQ’s ongoing effort to help shape the Nation’s digital healthcare ecosystem and realize its potential to improve outcomes through broader use of patient data.

PRISM—an acronym for PROMIS Reporting and Insight System from Minnesota—was developed by a multi-disciplinary team, including members from the University of Minnesota, Fairview/HealthEast Kidney Stone Institute, EMF Consulting, and digital health company PerkHealth. It offers doctors, nurses, and other clinicians a way to collect standardized PRO data from patients in both clinical and non-clinical settings. Among its unique features, PRISM shows how a patient’s data compare with other patients of similar age and gender.

After it won the Step Up App Challenge, PRISM was tested in nine practice settings affiliated with MedStar Health in Washington, D.C., Maryland, and Virginia. As summarized in a recently released report, this AHRQ-supported pilot testing demonstrated various factors critical to the successful adoption, potential scaling, and sustained use of this technology in ambulatory care settings. Importantly, the MedStar pilot demonstrated how to structure an efficient technical architecture to make PRO data usable within three EHR systems.

Feedback from patients during the pilot test showed that the PRISM app improved patients’ care experiences. As one patient remarked, “I liked when the doctor pulled it up. That was eye opening. Game changer… I would love for my doctor to know my interest in my health. It makes it a real partnership. It’s not just your doctor telling you information and you listening. It makes you an active participant.”

We’re thrilled that the code used to develop PRISM is now publicly available. If you are interested in developing a similar app that uses current standards, please take a look at the code! It can serve as a building block and save you some time and trouble.

The PRO research that AHRQ is supporting is promising and cutting-edge. The technology to collect PRO data in a standardized manner and integrate the data into EHR systems is still young but, with AHRQ support, is advancing rapidly. Standardized and interoperable PRO data can be shared among providers so that patients do not need to complete duplicate surveys during different clinic visits. Its potential to improve whole-person care with a 360-degree view of the patient is enormous.

In this COVID-19 age, it’s critical that patients communicate all of their relevant health data to clinicians in a timely, usable fashion so they can be treated appropriately. PRISM is an example of a digital solution for how PRO data can be used to improve quality and care delivery and can empower patients to better manage their health. It’s an innovation that I believe clinicians and patients will regard as invaluable.

This article was originally published on AHRQ Views Blog and is republished here with permission.