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): 
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.” 
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.
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. 
Correctly collecting and measuring patient-sourced data can go a long way in demonstrating improvements and informing shared decision making.
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:
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.
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:
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:
There are a few common questions about PROs and patient engagement.
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.
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.
When you use these principles in your PRO program and understand how to engage patients in their healthcare, your level of patient engagement and response rates will increase.
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.
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