Relentless Health Value

What I Said at the Rare Disease Roundtable Last Week (INBW23)

Rare Disease Management Takes Stakeholder Collaboration — Here's What That Actually Requires. Episode INBW23.

Stacey Richter was recently invited to attend and present at a Rare Disease Roundtable hosted by Health Catalyst and McDermott Will & Emery in Boston, where she and a colleague from Aventria Health Group spoke about enlisting stakeholder collaboration throughout the rare disease patient journey. In this episode, she shares what she said.

WHAT YOU'LL LEARN

✅ Why the burden of staying on top of clinical developments in rare disease falls disproportionately on patients themselves

✅ Why rare disease management fundamentally requires stakeholder collaboration and coordination between points of care

✅ Why pharma is uniquely positioned to drive organizational change in rare disease — and why what pharma needs to offer is more than just a molecule

✅ Why the effort required to collaborate on rare disease treatment has to be less than or equal to the perceived reward for that collaboration to actually happen

✅ Why including clinical trial endpoints in the package insert that reflect institutional and payer needs is a concrete step forward

WHY THIS MATTERS

Rare disease patients don't have the luxury of a well-worn treatment pathway — they depend on payers willing to fund evidence-based approaches and on stakeholders willing to coordinate across traditional silos. When collaboration requires more effort than the reward it delivers, it simply doesn't happen, which is why aligning incentives across pharma, payers, and providers is the real precondition for better rare disease care.

=== LINKS ===

🔗 Show Notes with all mentioned links: Episode Page

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00:00 Introduction.

00:43 The rare disease patient journey.

02:03 The burden to stay on top of clinical developments falls on patients.

02:14 The major problem with patients tracking clinical developments in rare disease.

03:42 Stacey's personal journey with a rare disease.

06:19 These stories aren't unique; there's a hard reality around rare disease management and treatment.

06:37 "Rare disease management takes stakeholder collaboration."

07:00 "Payers … need to pay for evidence-based approaches."

08:04 Rare disease management requires coordination between points of care.

08:57 The tough ask behind improving rare disease management.

09:41 Why Pharma is primed to affect organizational change.

10:50 "It is less about an individual patient … and more about a population of patients."

11:34 The effort required to collaborate to treat rare diseases has to be less than or equal to the perceived reward.

12:06 "What Pharma needs to offer up is more than a molecule."

12:47 Account managers, go to aventriahealth.com for blog posts on helping account managers develop the skill set to create collaborative relationships.

13:28 It is best to include clinical trial endpoints in the package insert that reflect institutional and/or payer needs.

Integrative Oncology Is Clinically Proven — Why Aren't Payers and Patients Hearing About It? With Glenn Sabin (EP233)

Meditation Got an A: Grading the Evidence for Integrative Oncology. Episode 233.

The Society for Integrative Oncology recently completed a systematic evaluation of peer-reviewed randomized clinical trials for breast cancer patients, assigning letter grades to therapies by strength of evidence: meditation earned an A, music therapy, yoga, and massage earned a B, and hypnosis earned a C. In this episode, Stacey Richter talks with Glenn Sabin, integrative oncology consultant at FON Consulting, about why these clinically validated therapies still aren't widely covered benefits.

WHAT YOU'LL LEARN

✅ How the Society for Integrative Oncology graded therapies like meditation, music therapy, yoga, massage, and hypnosis based on clinical trial evidence for breast cancer patients

✅ Why insurance carriers will reliably pay for the downstream costs of unfettered anxiety, stress, and poor nutrition, but not always for the integrative therapies that could prevent them

✅ Why access to integrative oncology often comes down to affordability — middle-of-the-bell-curve patients can't easily "splurge" on therapies insurance won't cover

✅ Why employer awareness of integrative oncology remains low, despite the clinical evidence behind it

WHY THIS MATTERS

When a therapy has strong clinical evidence but isn't a covered benefit, it quietly becomes a luxury good — available to patients who can pay out of pocket and out of reach for everyone else. Glenn Sabin's work pushes payers and employers to close that gap between what the evidence supports and what benefit design actually covers.

=== LINKS ===

🔗 Show Notes with all mentioned links: Episode Page

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Why the Right KPIs Are Vital to Improving Patient/Customer Experience, With Jon Skinner (EP232)

Your KPIs Should Be Your North Star for Customer Experience. Episode 232.

Happy customers are a prerequisite for business success in health care just as much as anywhere else — even when the customer is also called a patient. In this episode, Stacey Richter talks with Jon Skinner, executive vice president at The Verde Group, about why so many health care organizations haven't connected the abstract idea of satisfying customer needs to a concrete, KPI-driven strategy.

WHAT YOU'LL LEARN

✅ Why provider organizations like Cleveland Clinic walk the walk on patient/customer experience while other segments of health care lag behind

✅ Why KPIs derived directly from what customers actually need and expect should function as an organization's "North Star"

✅ How well-designed KPIs reveal whether an organization is really delivering on the customer expectations that lead to its vision of success

✅ Why focusing on long-run customer experience delivers superior market returns alongside better patient outcomes and satisfaction

WHY THIS MATTERS

It's easy to say an organization cares about customer experience; it's much harder to build KPIs that actually measure whether that's true. Jon Skinner's point is that without the right KPIs, good intentions about patient experience never translate into a strategic approach that can be tracked, managed, and improved.

=== LINKS ===

🔗 Show Notes with all mentioned links: Episode Page

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It is pretty much inarguable that happy customers are a prerequisite for business success. And that’s true in health care as much as it’s true in every other industry—although in health care, sometimes the customer is also called a patient.

Provider organizations like Cleveland Clinic are really walking the walk when it comes to creating amazing patient/customer experiences; so are other leading provider organizations. But in other segments of the health care industry, maybe they haven’t quite connected the dots between the idea of satisfying customer needs in the abstract and then what that actually looks like relative to a strategic approach.

Let me give you an example—certainly not all pharmaceutical manufacturers: Here’s where key performance indicators, or KPIs, come in. Everything we do should really be derived from what customers need and expect. This could be considered our North Star. And that’s why creating KPIs that focus on how well we are doing delivering on great customer experiences over the long run delivers superior market returns and patient outcomes and patient satisfaction.

My guest today on the podcast is Jon Skinner, who is an executive vice president at The Verde Group. Jon’s message is that your KPIs—if they are done right, in any case—should tell you if you are delivering on a set of customer expectations that are going to lead you to your vision of what success looks like. The Verde Group is a market research firm that specializes in quantifying the customer experience, in case you have not heard of them. I met Jon, by the way, at the PanAgora Pharma CX conference this past spring.

Jon Skinner is executive vice president with The Verde Group, a customer experience (CX) research consultancy focusing on the financial quantification of customer experiences. Jon works with market leaders across the pharmaceutical and health care space to help them identify the specific customer experiences most consequential to revenue and share growth, and then to develop CX improvements that sustainably grow customer value, build brand equity, and develop customer-centric cultures. 

Pharma Contracting, PBMs, and the HHS Rebate Proposal: What You Need to Know, With AJ Loiacono (EP231)

$186 Billion in Potential Charge-Backs: Who Wins the HHS Rebate Rule Land Grab? Episode 231.

Will the Department of Health and Human Services' rebate proposal materially change pharma's ability to "pay to play" on PBM formularies? With roughly $186 billion in potential charge-backs on the table and implementation details still being worked out, hidden middlemen across the drug supply chain are jockeying for position. In this episode, Stacey Richter talks with AJ Loiacono, CEO of Capital Rx, about the hidden complexity of pharma drug transaction contracting and what the HHS proposal could mean for it.

WHAT YOU'LL LEARN

✅ What the HHS rebate proposal actually does, and why its implementation flowchart is where the real fight is happening

✅ Why any middleman inserted into that flowchart takes a cut — creating a land-grab opportunity among previously hidden players

✅ How pharma, PBMs, pharmacies, and employers are each positioned to win or lose depending on how implementation shakes out

✅ AJ Loiacono's perspective from over 20 years in pharmacy benefits, finance, and software development, including cofounding Truveris

WHY THIS MATTERS

Rebate reform sounds like a technical footnote, but with $186 billion in potential charge-backs at stake, it's a fight over who gets to sit in the dark middle of the drug supply chain and take a cut. Understanding the mechanics AJ Loiacono lays out is essential for any employer, pharmacy, or plan sponsor trying to anticipate how their drug costs might shift.

=== LINKS ===

🔗 Show Notes with all mentioned links: Episode Page

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The Best Way to Improve Patient Outcomes, Satisfaction, and Reduce Burnout, With John Lynn (EP230)

"Organizational Culture Eats Strategy for Breakfast, Lunch, and Dinner." Episode 230.

Ambulatory patients spend about 84 minutes on average in a clinic — and only 7 to 12 of those minutes are actually with a physician. In this episode, Stacey Richter talks with John Lynn, founder of Healthcare Scene, Expo.Health, and HITMC, about why everything that happens in the rest of that visit — front desk, back office, janitorial staff, IT, finance — shapes patient experience and outcomes just as much as the doctor-patient relationship does.

WHAT YOU'LL LEARN

✅ Why the non-doctor portion of a patient visit — front desk interactions, care coordination, wait times — has a significant impact on both patient experience and outcomes

✅ How building what John Lynn calls a "culture of love" means aligning every role, from janitorial staff to IT to finance, around the mission of doing right by patients

✅ Why a culture of love can extend across organizations, not just within one, as peers share best practices and carry that enthusiasm back home

✅ Why strong leadership is the throughline connecting day-to-day drudgery to better patient outcomes, patient experience, and reduced clinician burnout

WHY THIS MATTERS

It's tempting to focus improvement efforts entirely on the doctor-patient relationship since that's where the clinical decisions happen. John Lynn's point is that the other 70-plus minutes of a visit — and everyone involved in them — carry just as much weight in determining whether a patient actually gets better care, making culture, not just clinical protocol, a lever worth pulling.

=== LINKS ===

🔗 Show Notes with all mentioned links: Episode Page

✉️ Enjoy this podcast? Subscribe to the free weekly newsletter

🫙 Support the podcast with a small donation to the Tip Jar

🎤 Listen on Apple Podcasts

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=== CONNECT WITH THE RHV TEAM ===

✭ LinkedIn ✭ Threads ✭ Bluesky ✭ X