Collecting Patient-Reported Outcomes Data at Scale: Why Volume Matters

By Christopher Young

In the past decade, the use of patient-reported outcomes (PRO) and patient-reported outcome measures (PROM) has become widespread across the healthcare industry. While PROs can be collected via a wide variety of reports containing questions regarding a patient’s health, quality of life, and/or functional status, PROMs are a standardized set of forms used across registries, often for a specific procedure. For example, the Hip Disability and Osteoarthritis Outcome Score is a common PROM used to evaluate patients who have had a total hip arthroplasty. Several standardized PROMs are also used to assess the patient’s quality of life across all procedures.

Many commercial health plans require PROM collection for participation in value-based programs, while accountable care organizations use PROMs to measure and incentivize providers for maintaining certain quality standards. According to the Council of Medical Specialty Societies, 24% of clinical data registries have already incorporated PROs into their datasets. And by 2030, the Centers for Medicare and Medicaid Innovation has declared that all Medicare fee-for-service beneficiaries—and most Medicaid beneficiaries—will participate in a service delivery model that provides accountability for quality and cost. Each model will include PROMs in its performance assessment, in keeping with CMS’ mission of rewarding high-value, high-quality care.

Clearly, the industry is already sold on the importance of collecting patients’ self-assessments of their health status. At present, many healthcare providers are interested in collecting PROMs not only to receive greater reimbursement, but also to aggregate quality performance data in pursuit of recognition as a health system or hospital of distinction. However, the implementation of routine PROM collection has been slow across the industry, due in large part to limited clinician engagement as well as workflow and technology challenges.

Historically, large healthcare systems have been accustomed to mailing patient experience surveys, receiving limited response, and then inputting that data into a system. As collection rates were dismal at best, this patient data was never particularly useful for measuring performance—especially not as compared with the kinds of quality key performance indicators healthcare systems are used to benchmarking, such as average length of stay, bed utilization, or readmission rates.

By measuring previously non-quantifiable data such as a patient’s symptoms, activities, functional status, and mental health, patient-reported outcomes can provide the missing link in a provider’s assessment of its own quality performance—but only if the data is available at scale. To achieve national recognition as a high-quality provider—whether it be through The Joint Commission’s Center of Excellence program or another organization—healthcare systems must submit validated patient-reported outcome data to demonstrate compliance with certain quality standards. This data must also be statistically significant, which presents a challenge for many organizations.

The connection between value, engagement, and response rates

In short, providers must collect PROMs frequently enough—and from a large enough percentage of the patient population—to enable accurate, reliable benchmarking. To understand how a specific service impacts an outcome, a health system needs a wealth of baseline data on its patient populations. When PROM collection rates are frequently below 50%, how does a health system gather this data?

To achieve a statistically significant PROM collection rate of 85% or higher, providers need a care management platform that delivers true value for patients. Many healthcare technology vendors offer PROM collection as an add-on to existing EHR systems or specialty applications. However, these services are essentially just a digitization of the existing process: Instead of filling out forms in the doctor’s office, the patient is asked to fill them out online.

While patients who are committed to adhering to their care plan might complete one or two forms preoperatively, the patient doesn’t receive anything of value for their time. Forms that feel like busywork do not compel repeat submissions, as patients are not engaged. In addition, these systems cannot configure or customize patient-reported outcome forms to capture any of the pertinent information a hospital might want to collect for care redesign, such as medication usage, type and level of pain, degree of activity, etc.

The right care management platform, on the other hand, becomes the patient’s companion throughout the care experience, offering everything from preoperative planning to virtual physical therapy classes, provider messaging, and help coping with unexpected setbacks. A thoughtfully designed platform will automatically have a high patient opt-in rate, as it is initially presented to the patient as a physician-aligned tool that will provide crucial guidance throughout an episode of care. Adoption rates depend on patients quickly understanding the value proposition of using the tool: What’s in it for them?

An interactive care management platform can use AI and machine learning to adjust a patient’s care path in real time, positioning the tool—and by extension, the patient’s physician—as responsive to their needs. Patients who view care management technology as essential to their recovery process do not forget the experience; the platform gradually builds trust as it helps patients navigate the various hurdles and successes of their recovery.

As a result, these patients are often eager to respond to a quick PRO or PROM request by text, even six months or a year after their procedure. Some care management vendors have managed to achieve one-year postoperative PROM collection rates of 75% and up, driven by accumulated goodwill for the role of the platform in a holistic care journey.

Using patient-reported outcome data at the patient level   

Collecting patient-reported outcomes at scale generates a wealth of data that can be extremely useful at the individual patient level. Preoperative forms can help establish a patient’s functional capabilities before surgery, while postoperative PROM collection at regular intervals can help providers determine if the patient is progressing at an acceptable rate, benchmarked against other patients in a similar demographic who have undergone the same procedure. If not, a clinical determination of failure to progress can open the door to additional authorizations for successive treatments, helping patients secure coverage for their next steps.

A healthy set of PROMs can also help healthcare systems track minimal clinically important differences (MCID), or changes in a clinical intervention meaningful for the patient. As long as healthcare systems have sufficient data points collected per patient, they can determine the quality of an intervention from the patient’s point of view—which can drive tweaks and improvements to care paths in the absence of clinical data.

Several emerging technology vendors have released applications that feature condition- or procedure-based patient communities, in which patients can network with others in a similar situation. While these communities can be valuable for moral support, it’s important not to allow patients to compare their own progress with that of their peers. Patients who measure their progress (or lack thereof) in comparison to others may easily become discouraged, even when there are valid demographic and circumstantial reasons for a disparity in results.

To provide the most value, a care management platform should inquire about the patient’s personal goals for recovery and visibly demonstrate ongoing progress toward those milestones. Research indicates that 88% of care management platform users want to understand how close they are to meeting their goals. When a patient is taking concrete steps to achieve their goal—whether it be walking the dog or dancing at their child’s wedding—it is much easier to maintain motivation, and thus the kind of daily engagement that leads to better outcomes (and better data).

A good care management system will parcel out requests for PRO or PROM survey completion over time, aligned with the patient’s progression. This helps combat form fatigue and leverages the patient’s momentum to encourage compliance. Patients should also be able to complete survey forms via a secure link delivered by text or email, without needing to log in to the care management platform. Simplifying the request helps to drive sustained compliance.

Driving care transformation with aggregated patient-reported data

Hospitals and healthcare systems with high PROM collection rates can also use the data points they collect to drive meaningful care reform initiatives. As many patient-reported outcomes are related to quality-of-life issues, for example, healthcare systems can use reports such as incontinence after a prostatectomy to reengage with the patient, drive additional care, and increase patient satisfaction. On a systemic level, metrics like these can be used to identify best practices and drive quality improvements for a specific population.

Of course, the healthcare system must first have the ability to design its own PRO forms to capture the specific outcomes data it wishes to measure. For example, one hospital with a 96% patient opt-in rate for its care management platform (along with a 94% PRO and PROM compliance rate) redesigned its clinical protocols for patients receiving total knee and hip replacements based on patient medication and consumption data, which indicated that patients did not need opioids to manage their pain as much as the hospital had previously assumed.

As the hospital had collected more than 108,000 validated forms—including many custom-designed PROs that were intended to drive care redesign initiatives—from approximately 12,000 hip and knee patients, they were confident that this data accurately represented the complete patient population. As a result, the hospital has dropped unnecessary opioids from its care paths, reducing narcotic usage by 43% in the first postoperative week.

This kind of transformative change is only possible with high levels of patient engagement, and thus participation in outcomes reporting. If a healthcare system only collects patient-reported outcomes data from half its patient population, benchmarking an individual patient’s progress by that data is ineffective. The data is inevitably going to be skewed in ways that the healthcare system cannot adjust for or correct, as those who failed to participate can belong to various subpopulations. Similarly, organizations cannot drive meaningful systemwide performance improvement based on insufficient data, because they cannot make larger inferences with any degree of certainty.

For health systems, hospitals, and specialty provider organizations, patient-reported outcomes data can pave the way to national accreditation, higher reimbursement, and improved quality performance. Developing robust patient-reported outcome datasets is worth the effort, as more accurate benchmarking—at the individual patient, procedure, clinician, facility, and population levels—allows a healthcare organization to identify best practices and surface new opportunities to improve the quality of care.

Christopher Young is the head of product at Force Therapeutics.