What Patients Know That the Chart Doesn't Show
Why Patient-Reported Outcomes Are the Missing Layer in Real-World Evidence — and How Veradigm Is Closing the Gap
Real-world evidence has never been richer. Claims databases. Electronic health records. Lab values. Social determinants of health. Life sciences organizations now have access to longitudinal patient data at a scale that would have been unimaginable a decade ago.
And yet a critical dimension is still missing from most real-world studies: the patient’s own perspective.
Structured clinical and claims data tells us what happened — a prescription was filled, a diagnosis was recorded, a lab result came back. What it rarely tells us is how the patient experienced it. Whether a medication was helping or causing side effects they quietly tolerated. Whether they were supplementing their prescription with over-the-counter alternatives. Whether they intended to stay on therapy — or were already planning to stop.
These aren’t soft questions. They are increasingly the questions that regulators, payers, and prescribers need answered. And the only source that can answer them is the patient.
The chart shows what happened. The patient knows why.
The Evidence Gap Has Real Consequences
Consider what’s at stake when patient experience data is missing from an evidence program:
- FDA and HTA bodies are increasingly asking for patient-centered endpoints. Studies designed without patient-reported outcomes (PROs) may lack the evidence needed for labeling claims, reimbursement submissions, or post-market commitments.
- Payers want to know whether a treatment improves how patients feel and function — not just whether it moves a biomarker. Value dossiers built on clinical endpoints alone are becoming harder to defend.
- Adherence and persistence patterns that look like treatment failure in claims data are often explained by patient experience factors — tolerability, convenience, unmet need — that never appear in a chart.
- Clinical trials answer efficacy questions in controlled populations. Real-world PRO data answers effectiveness questions in the patients who actually receive the drug.
This isn’t a niche concern. It’s a structural gap in most real-world evidence programs — one that patient-reported outcomes surveys are uniquely positioned to fill.
What Makes PRO Data So Difficult to Get Right
The challenge isn’t that life sciences teams don’t understand the value of patient voice. Most do. The challenge is operational: reaching the right patients, at the right time, with a survey that produces valid, analyzable data — and then connecting those responses to clinical records where they can actually inform research.
Traditional approaches fall short in predictable ways. Third-party survey panels reach patients who may bear little resemblance to the treated population in a sponsor’s real-world study. Patient registries take years to build. Cold outreach generates response rates in the low single digits. And even when data is collected, it typically sits in a separate system, disconnected from the claims and EHR records that give patient responses their clinical context.
The result: PRO data is often treated as a secondary signal — interesting, but not integrated enough to anchor a real-world evidence program. That’s changing.
Veradigm’s Integrated Approach to PRO Surveys
Veradigm’s RWE PRO Surveys solution was built to solve the operational problem directly. It combines two assets that few organizations in the industry possess simultaneously:
- The FollowMyHealth® (VFMH) patient engagement platform, with approximately 25 million active patients who use it to communicate with their care teams, manage appointments, and access health information. When a survey arrives through VFMH, it arrives through a channel patients already trust.
- The Veradigm Network EHR (VNEHR) database, a nationally representative clinical data asset covering independent practices across the U.S. — capturing diagnosis, medication, lab, and encounter data for the same patients reachable through VFMH.
The integration of these two assets is what makes Veradigm’s approach different. Because the platform knows who the patient is and what medications they’re on before a single survey question is written, the survey itself can be radically focused — asking only what the clinical record can’t already tell you.
The result: shorter surveys, higher response rates, and data that sits natively alongside the clinical records it needs to contextualize.
From Invitation to Insight: How It Works
The process follows four steps:
Target. Patient cohorts are defined using clinical precision — diagnosis codes, medication records, or real-time trigger logic that identifies patients at the moment they start a new therapy. The VNEHR database provides the clinical foundation; FollowMyHealth provides the access.
Invite. Eligible patients receive a secure, project-specific survey invitation through their VFMH account. Because it arrives through a familiar, trusted channel, participation rates consistently exceed industry norms — often by a significant margin.
Respond. Patients complete surveys on their own schedule, on any device. Informed consent and patient compensation are built into the workflow. Reminder strategies are calibrated to maximize response rates without eroding patient trust.
Connect. Survey responses are linked to the same patients’ clinical records — diagnosis history, medication data, claims, SDOH — creating an integrated dataset that’s greater than the sum of its parts.
A brief survey completed in under a minute can generate evidence that a years-long retrospective study cannot.
A Real-World Example: Dry Eye, Satisfaction, and Predicting Refill
In a recent study, a life sciences sponsor wanted to understand patient satisfaction with their prescription dry eye drops — and whether patients intended to refill. Neither question was answerable from claims or EHR records alone.
Working with Veradigm, they designed a highly focused survey that asked patients directly: how satisfied are they with their current drops, are they supplementing with OTC alternatives, and how likely are they to refill — across four specific products. Because the platform already knew which medications patients were taking, the survey itself took an average of approximately one minute to complete.
The response rate on this uncompensated survey was approximately 16% — roughly eight times the industry standard for digital surveys*. And when the team validated patient-reported refill intent against actual refill behavior in pharmacy claims, the two datasets correlated closely. Patient intent predicted claims behavior.
The study was presented at multiple international HEOR conferences. The finding demonstrated something important: when PRO data is integrated with clinical records and delivered through a trusted patient platform, it doesn’t just add color to an evidence program. It adds predictive signal.
What This Means for Your Evidence Strategy
If you’re building a real-world evidence program and patient experience is either absent or siloed from your clinical and/or claims data, you’re working with an incomplete picture. That gap has consequences — for regulatory submissions, for payer conversations, for the commercial arguments you’re able to make about your therapy’s real-world value.
PRO surveys don’t replace clinical data. They complete it. And Veradigm’s integrated approach means the data you collect from patients isn’t a standalone dataset that needs to be reconciled with your real-world data— it’s the same population, the same records, the same evidence program.
The patient voice has always been part of the story. Now there’s an infrastructure that lets you capture it at scale, in real time, with the clinical context that makes it actionable.
Veradigm’s RWE PRO Surveys are available in two tiers to fit your study design — from cohort-based studies using existing diagnosis and medication records to real-time trigger-based designs that reach patients at the moment of clinical relevance. Add-ons include longitudinal tracking, custom instrument development, and IRB submission support.
Ready to put the patient voice at the center of your next study?
Connect with Veradigm’s RWE scientific experts to see how PRO Surveys can strengthen your evidence program.
Learn more at veradigm.com/life-sciences →
References:
© 2026 Veradigm Inc. All rights reserved.
- 2026 Veradigm PRO Survey Response Rate and Completion Statistics 
- FDA Guidance on PRO measures, (FDA.gov). 
- Veradigm’s PRO Survey methodology is designed to comply with applicable federal and state privacy laws, including HIPAA. All patient participation is voluntary and subject to appropriate consent processes. Study protocols are conducted in accordance with applicable IRB requirements and data governance standards.
About Veradigm Life Sciences: Veradigm is a healthcare technology company providing data analytics, patient engagement, and real-world evidence solutions to life sciences organizations. Our FollowMyHealth® platform connects approximately 25 million active patients to the providers and research programs that need their voice.