From Foundational to Elite: Why Rare Disease Patient Support Needs an Elite CX Strategy

In the rare disease world, patient support programs — often called Hubs — are the heartbeat of the patient experience!

Whether operated internally or through an external partner, these services handle critical touchpoints: onboarding, access and reimbursement, adherence support, ongoing communication.

And from the patient’s perspective? It doesn’t matter who’s running the show. They just want an experience that’s empathetic, responsive, and frictionless.

Unfortunately, the way most support programs measure that experience is still stuck in the past — a static survey once a year, maybe a random follow-up here and there.

That’s no longer good enough.

It’s time to reimagine how we listen — and respond — to patients.

From Foundational to Elite: A New Model for Patient Support CX

At PeopleMetrics, we have worked with patient support teams for 10+ years to measure and improve the patient experience.

As part of this work, we’ve developed a hierarchy of patient experience measurement tailored specifically to rare disease support programs.

It’s a step-by-step model that helps support teams evolve from basic listening to proactive management of the entire experience.

Here’s how it breaks down:

🟦 Foundational

• Annual relationship surveys – surveys to all patients and HCPs who have interacted with the Hub in the past 6 months.
• Post-call transactional surveys – surveys after a patient calls to receive support.
  ✅ Establish baselines and uncover systemic issues

🟦 Advanced

• Continuous onboarding feedback survey – targeted survey questions around the onboarding experience.
• Adherence milestone check-ins – surveys after key adherence milestones, such as 6-months after onboarding.
  ✅ Identify friction points early and drive real-time improvement

🟧 Elite

• Collection and analysis of unsolicited feedback (calls, chats, wait times)
  ✅ Understand sentiment and behavior without asking — and act faster

Each layer adds depth and clarity to what patients are really experiencing — and what needs to change.

Why It Matters More Than Ever

Rare disease patients and caregivers are navigating uncertainty, complexity, and emotional overwhelm.

Every interaction with your support program — from the first call to ongoing adherence support — shapes their journey.

And they remember how it made them feel!

Programs that continuously listen and act on patient feedback:

• Increase onboarding and the experience around it
• Increase trust and treatment adherence
• Uncover systemic barriers before they escalate

This isn’t just about collecting feedback. It’s about creating a better experience by design.

What’s Next?

This post kicks off our series on how to evolve your patient support program from Foundational to Elite CX.

We’ll unpack each stage in detail, share examples, and offer practical steps to level up your approach.

Because in rare disease, great treatment isn’t enough.

The experience around it must be great too!

P.S. If you are attending Asembia in Las Vegas the week of April 28^th, stop by our booth (#1923), we would love to say hello!