Brainstorm Health
Jason Binder, Rebekah O'Dell, Angeline Giammona, Erica Olenski, BCPA, CPXP, Douglas SchoenbergBrainstorm Health is where lived experience meets understanding. We explore the real questions, patterns, and moments that emerge for patients and caregivers navigating serious illness—and what they reveal about how support can be better designed.
| Platform |  | Pricing | Freemium | Publishes | Daily |
|---|---|---|---|---|---|
| Issues | 145 | Founded | 2 years ago | Last Issue | 6 days ago |
| Active | |||||
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brainstormhealth.substack.comLatest Issues
When Patient Becomes a Verb
Today, my wife completed her second week of healing (radiation) sessions, so one third of her radiation treatments down. Although she has experienced very minor side effects (mostly light fatigue), we’ve come to understand why they use the...
Beyond Engagement: When Lived Experience Becomes Evidence
A recent article from Parexel on the evolving EU Health Technology Assessment (HTA) framework caught my attention. On the surface, it’s about patient and clinician engagement. Underneath, it’s about something much bigger: a redefinition of...
Patients Participate in Trials. Families Make Participation Possible.
I recently read Evinova and ISPEP’s new report introducing the EACH Framework for patient-focused clinical trial recruitment. The report is thoughtful, practical, and grounded in many of the challenges that have frustrated patients, caregiv...
Early Engagement Is Good. Continuous Engagement Is Better.
Bristol Myers Squibb recently published a white paper on early patient engagement in drug development. At its core is a simple but important idea: patients, caregivers, and advocacy organizations should be involved before key decisions are...
Every Person Saw One Version of Me
The weight of caregiving isn’t invisible because it’s small. It’s invisible because it’s everywhere.
Nobody warned me that caregiving would mean becoming the keeper of the full picture. Not just the medical picture, the life picture. The d...
Audience Metrics
Subscribers, engagement, traffic and sponsorship for Brainstorm Health.
| Subscribers | Engagement | 73 | Monthly Web Visits | ||
|---|---|---|---|---|---|
| Accepts Sponsors | Estimated Cost per Ad | ||||
Chart Rankings
How this newsletter ranks in the official Substack charts.
| #245 |
Authors
The writers behind this newsletter.
Jason Binder is a caregiver, patient advocate, and healthcare leader who created the GBM Companion after his wife’s diagnosis to provide trusted, compassionate support for others facing glioblastoma.
Teacher, Author, Consultant
Mother, caregiver, and product marketing leader writing about serious illness, decision-making under pressure, and the invisible labor families carry. Co-founder of Ember, building new ways to support what happens between appointments.
I’m Erica Olenski, a healthcare strategist, entrepreneur, caregiver, and advocate. I write about healthcare innovation, leadership, and how lived experience should shape what we build next.
Douglas Schoenberg is the CEO of SofterWare. His wife, Lisa Schoenberg was diagnosed with GBM in August of 2024. Since Lisa’s diagnosis the Schoenberg’s new mission in life is improving the treatments and resources available for GBM patients.
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