Patient-Reported Outcomes and Clinical Registries: The Basics

More and more clinical data registries are including the patient perspective with patient-reported outcomes (PROs). In a recent member survey of the Council for Medical Specialty Societies (CMSS):¹

• 36% of the registries reported having engaged patients or patient groups.
• 24% of the registries reported having incorporated patient-reported outcomes into clinical registry data.

Those stats are according to “Engaging Patients in Clinical Registries,” a primer for organizations developing and advancing clinical data registries by the Council for Medical Specialty Societies.

CMSS states it well:

“As the use of registries expands and the health care system’s focus on meaningful measures and patient-centric care evolves, the impetus for broad stakeholder input, including that from patients and families, is also growing. Patients, families, and caregivers are now playing an essential role in helping to identify and prioritize aspects of care that are important to them.” ¹

We see a growing number of our own medical society and quality collaborative customers using patient-reported data in their registry programs. Some use PRO data and measures to enhance or supplement other sources of data. Others, like the National Hemophilia Foundation, have centered their entire registries on patient-sourced data.

Before diving into the details of how to be successful with patient engagement and PROs, it is necessary to understand the importance of patient-provided information and how it can better inform true outcomes and performance.

What Is a Patient-Reported Outcome?

A patient-reported outcome (PRO) is "an outcome measure based on a report that comes directly from the patient (e.g., study subject) about the status of the patient’s health condition without amendment or interpretation of the patient’s response by a clinician or anyone else,” according to the National Health Council.²

Correctly collecting and measuring patient-sourced data can go a long way in demonstrating improvements and informing shared decision making.

Why Are Patient-Reported Outcomes Important?

When it comes to healthcare quality and outcomes, the patient voice informs the full picture, and fills in the “gaps” between care visits documented by their physician or specialists. PROs are the missing piece that complete the puzzle.

There are parts of the story that only the patient (or a family member or caregiver) can provide, like:

• Types of symptoms
• Frequency of symptoms
• Severity of symptoms
• Nature and severity of disability
• The impact of disease or condition on the daily life of the patient
• Perception or feeling of the patient toward the disease or the treatment given

These factors better inform physicians and care team members as they treat patients.
They can use medical assessments, tests, and their own expertise alongside patient-provided data to gain additional context and use it to deliver higher quality care.

Use Cases for Patient-Reported Outcomes

By optimizing data collection from patients and analyzing patient-reported outcome data, registries can add value to quality improvement and research, while also ensuring that patients can easily and discretely share their information.

The clinical registries we support use patient-reported outcomes to:

• Track outcomes, health, and well-being longitudinally
• Support and improve shared decision making
• Identify patients for registry-based research studies and clinical trials
• Inform measures, develop guidelines, and calculate predictive analytics

How to Collect Patient-Reported Outcomes

When effectively collected, tracked, and analyzed, patient-reported outcomes are a highly useful data source for making more informed decisions and improving the quality of care, treatments, therapies, and interventions. Healthcare analytics technology and clinical data registry software have made this process easier.

There are 3 steps involved:

1. Building and distributing patient surveys: Patient-reported outcomes surveys should collect the right data from the right person at the right time. Your PRO technology should give you the functionality and flexibility you need to securely and successfully distribute surveys to patients and caregivers anytime, anywhere.
2. Analyzing patient-reported outcomes data: Your registry should provide a single source of truth. Acquiring and blending PRO data with other data sources, and transforming it through advanced analytics, will get you the rich data asset you need for healthcare quality improvement and research.
3. Sharing and using patient-reported data: Patient-reported data has unlimited purpose. But it’s only as useful as you make it. As you design your program, ask yourself:
   • How are we making answers and responses available to physicians and researchers?
   • How are we sharing information back with patients?
   • How are we combining patient data with other clinical data sources?
   • Are we connecting patient-sourced data to physician performance?

Challenges with Patient-Reported Outcomes

There are a few common questions about PROs and patient engagement.

Is Patient-Reported Outcome Data Accurate?

A question we sometimes get is whether there is disagreement between the data collected by physicians in the care setting, and the outcomes reported by patients in the home setting. Would data collected across systems and care settings provide opposing results for the same patient?

Research shows a high correlation between patient-reported data and clinically documented chart abstracted data. This means data collected from patients is accurate and trustworthy. An article published in the Journal of the American Medical Association looked at this specific topic. Results were very positive in favor of the accuracy of patient-reported data. The data ranged from 80% to 90% in agreement. Our customers have done similar analysis on their data, and have found similar results.

How Do I Improve Patient Engagement?

Gaining active participation from patients in their health can be challenging, especially over the long term. Addressing this comes down to a few simple concepts.

1. Treating patients like consumers: Patients want to talk about how their health and emotions are impacted by experiences, and simple and intuitive technology can be used to capture this vital information.
2. Recognizing the role of technology: Tech plays a central role in PROs. The patient experience should be cutting edge and multi-modal, and the survey design experience should be simple and effective.
3. Using personas to guide the experience: Patients are people of different ages, backgrounds, ethnicities and experiences, so the PRO experience should be tailored in ways that attract and engage them.
4. Understanding that ongoing engagement needs creativity: Patients keep participating when they get something in return. This can be as simple as understanding how their data was used to benefit themselves and others like them. Or as complex as gamifying participation for both younger demographics and high-frequency surveyed populations.

When you use these principles in your PRO program, your level of patient engagement and response rates will increase. If you want to learn more about engaging patients and collecting valuable patient-reported data, read How to Engage Patients and Collect Valuable Patient-Reported Data.

Get Started with PROs

Informing a more complete view of quality with patient-reported outcome data helps you achieve even greater results with your clinical data registry or quality improvement program.

Our patient reported outcomes tools collect the right data from the right patient at the right time with modern and intuitive patient-reported outcome surveys, accessible through any web-connected device. Our technology also helps you simplify conversations between patients and family members and their care teams with personalized, patient-centric dashboards that highlight a timeline of personal and clinical events, health statistics, and trends.

If you have any questions or would like to learn more about our registry and patient-reported outcomes solutions, contact me at seubank@arbormetrix.com.

References:

1. Engaging Patients in Clinical Registries. Council for Medical Specialty Societies. November 2019.
2. Glossary of Patient Engagement Terms. National Health Council. Accessed May 2020.