Closing the Evidence Gap: Integrating Patient Experience Data and Real-World Evidence

Real-world data can tell us what happened to patients — the diagnoses, the costs, the hospitalizations. But it often can’t tell us what it was like.

As payers and HTA bodies push for evidence that captures the full patient experience — lived experience, daily functioning, work productivity, caregiver burden, healthcare resource use (HCRU), and direct costs — sponsors need more than one data source to tell the whole story.

In this paper, our experts explore how combining RWE with patient-reported and observer-reported data closes this “burden gap” — especially in rare disease, neuroscience, and conditions where the most meaningful impacts happen far outside the clinic. As the paper puts it, when RWE and patient experience data are thoughtfully integrated, results “close evidentiary gaps in a way that neither RWE nor patient outcomes can achieve independently.”

The solution is a multi-method approach that combines both. Two ways to link the data:

• • Patient-level linkage. The same individual appears in both datasets. It gives end-to-end insight and stronger causal plausibility. It also brings added complexity and small samples

• • Segmentation-based triangulation. RWE and patient-reported data are connected through pre-specified segments, such as severity or treatment status. It works when re-identification isn’t possible and gives a credible burden narrative by strata

The right choice depends on your evidence question and your strategic objective, whether that’s an HTA value story, a burden-of-illness publication or caregiver inputs for economic models.

Read on to see how a multi-method approach can strengthen your next HTA submission, burden-of-illness story, or economic model.