Last week, we submitted a formal response to the Centers for Medicare & Medicaid Services (CMS) about something that affects every caregiver, parent, nurse, and older adult: how hard it still is to access and share the health information you need, especially when time matters most.
Why did we respond?
Because our families deserve better.
Because our healthcare professionals have spent years watching people struggle with broken portals, endless paperwork, and miscommunication.
And because Primary Record exists to fill that gap.
Here’s what we shared with CMS and how we’re already putting these lessons into action.
Lesson 1: Families Need Help Paying for Better Tools
Most families love the idea of having one place to store and manage all their health information. But when faced with yet another subscription, on top of medications, appointments, and daily costs, they hesitate.
And the hospitals, clinics, and care providers that could benefit from families having a Primary Record often don’t adopt tools like ours because there’s no reimbursement model to support them.
What We Told CMS:
Create a way to reimburse nurses, advocates, and care teams who use digital tools like Primary Record to help families during care transitions and coordination.
What We’re Doing Today:
Primary Record is free for every family to get started. Premium features like larger document uploads, patient portal integrations, and AI support have monthly limits, but many families choose to pay a month-to-month subscription or access the premium side through care professionals like Haven Healthcare, KayBee, Pediatric Care Advisors, Avanti, Dillman & Owen, and A&J Advocacy, who bundle the cost into their services.
Why? Because we believe owning your health data shouldn’t be a luxury, it should be the norm.
Lesson 2: The Big Wins Come When Care Changes Hands
Every time someone moves from hospital to rehab, changes health insurance, or sees a new doctor, records get lost, details get missed, and families are left to fill in the gaps.
Nurses and care managers spend hours tracking down paperwork, reconciling medications, and making phone calls just to figure out what happened.
What We Told CMS:
Stop putting all that burden on families and frontline teams. Require that medical summaries be sent automatically to caregiver-approved tools like Primary Record.
What We’re Doing Today:
We’ve pitched Primary Record to schools, senior living facilities, transplant programs, and foster care teams, often by request from our families. And while many of them said, “This would be a game-changer,” they still see it as an “extra” rather than essential infrastructure.
We’re working to change that and we’re proud our families and professionals are already leading the way by organizing and sharing Primary Record with every care team they meet.
Lesson 3: When Health Data Breaks, Families Get Stuck in the Middle
When the “pipes” that carry health data (called APIs) break silently, families are left without the updates they expect. It’s like ordering a package and suddenly the tracking stops working.
What We Told CMS:
This isn’t just annoying, it’s a safety issue. If caregivers are making decisions based on incomplete or outdated information, the system has failed them.
What We’re Doing Today:
If you’ve ever noticed a missing medication or visit in your Primary Record, it might be because of a broken connection. But thanks to our families and professional who speak up, we investigate immediately. We’re pushing CMS to enforce reliability standards and to enable tools like Primary Record to report access issues and information blocking with one click.
Why All of This Matters
Primary Record now supports over 900 families—and counting. We built this platform with real-world users, real caregiving challenges, and real stories in mind.
This submission to CMS was our way of saying: we see you, we hear you, and we’re fighting for better.
If you’re already using Primary Record, you’re already part of the proof that a better way is possible.
If you’re new here, welcome to the movement, and please contact us with your questions!
Know someone helping families stay on track?
Whether it’s a care coordinator, case manager, nurse navigator, school health staff, or a professional advocate, forward this blog post to them or have them contact us. These are the people working every day to make sure families don’t fall through the cracks, and we want to help!
Let’s build a network where health information moves at the speed of care decisions. Together, we can make health data work for families, not against them.
