By Jean Ross, RN and Kathy Lee, MPH
The healthcare system was not built for daughters. It was built for the patient, but you’re the one carrying the binder into the ER, spending afternoons on hold, and logging into portals as your parent because there’s no other way. If any of that sounds familiar, this article is for you.
The Centers for Medicare & Medicaid Services (CMS) is building a Health Technology Ecosystem – a framework that lets patients access health records digitally across providers, without logging into a dozen separate portals. The rallying cry: Kill the Clipboard! The promise is that your medical history should follow you, not the other way around.
I recently sat down with Kathy Lee, a fellow daughter, who has also spent years working in health information and data exchange and is an attendee of the When the Clipboard Gets in the Way circle. Together, we watched a recent CMS event and talked honestly about what it means for those of us in the trenches.
The Excitement Is Real. So Is the Confusion.
Kathy came away from the CMS event genuinely hopeful. “I’m super excited that we won’t have to log into different portals or chase records,” she told me. “That it can all come into one place AND the data can be shared with providers so we’re not the ones having to remember the health histories of our loved ones.”
She also talked about something that resonated deeply with me: the dream of having all of a parent’s data in one place and being able to ask a simple question – What medications has Dad been on? What was Mom’s weight trend last month? – and actually get a useful answer, rather than spending an hour clicking between systems and sifting through notes.
“Beyond the portals and paper records, I also keep detailed notes of provider conversations and every change in condition. In an ideal world, I can go to one place and easily find that one data point (like his last A1c) to help me manage and advocate for their care.” – Kathy Lee
But here’s the tension: the excitement is real, and so is the confusion. After four hours of presentations, Kathy’s biggest question was simply: “Okay. Where do I start? Who do I start with?”
So…What Actually Exists Right Now?
CMS has created a Medicare App Library, a centralized directory of apps that have been vetted and certified to connect to health records. In theory, this is where you’d go to find a trusted tool rather than randomly downloading something from the App Store.
One important thing to know: being listed in the library means an app has gone through a certification process, so there’s at least a baseline of protection before it ever touches your parents’ data.
The Caregiver Problem Nobody Is Solving…Yet
Here’s what frustrated Kathy and me most: almost none of this is designed with caregivers in mind.
The language is “patient-centered.” The apps are built for “Medicare beneficiaries.” But the reality? It’s you – the daughter, the son, the spouse – downloading the app, creating the account, and figuring it all out.
“I don’t even put his phone number on anything anymore. It’s all coming to me. I’m the one getting everything.” – Kathy Lee
We all know the story: chasing down an authorized rep form, mailing it in paper because they don’t accept email, calling back to confirm it was received. We laugh … because what else can we do?
How you prove who you are so that you get formal, secure access is still being figured out. CMS has mentioned caregiver accounts as a future development, but details are to come.
A practical tip: Update your parents’ contact info everywhere – doctors, insurers, pharmacies – so they’re routed to you. That way, appointment reminders and forms come to you, not a phone your parent may never check, especially if they can’t manage their own affairs or have limited-English proficiency, which adds another layer of coordination.
What This Looks Like in Practice
The vision for Kill the Clipboard is that you can walk into a doctor’s office, show a QR code from your app, and have your records instantly available! No more forms, no faxes, no re-entering the same medication list for the fifteenth time.
We’re not there quite yet. The apps may still require you to log into your MyCharts, and as of now, they produce a PDF the doctor has to manually review. And caregivers are finding that specialty providers, mental health practices, and skilled nursing facilities are still largely outside the ecosystem.
But here’s something that did give both of us chills: the historical data. When these systems do connect, they can surface records going back years – even decades – pulling together a picture of your parents’ health that you might not have been able to access before. And with conversational AI being woven into some of these tools, you may soon be able to simply ask a question and get an answer from that full history, rather than hunting for it yourself.
What Should Daughters Do Right Now?
You don’t have to become a health IT expert. But here are a few steps:
- Stay curious. This ecosystem is real and growing. You don’t need to necessarily act on it today.
- Use the Medicare App Library as your starting point. Visit https://www.medicare.gov/health-apps when you’re ready to explore apps.
- Update contact info everywhere. Put your phone number, not your parents’, as the contact at every provider, insurer, and pharmacy you’re actively managing.
- Download records before EHR transitions. If you hear that a hospital or health system is switching platforms, pull everything you can now. Data sometimes gets lost or siloed in these migrations, and it’s far easier to grab it before the switch than to chase it afterward.
The vision of health data working for caregivers – not against them – is genuinely worth fighting for. The daughters in our community are already doing the coordination work that the system hasn’t figured out how to support. You deserve tools that see you, recognize your role, and make this easier. That world is being built. And in the meantime, you’re not alone to figure it out!
About the Authors
Jean Ross, RN is a registered nurse and founder of Primary Record, a health record tool built for family caregivers. She leads the Daughterhood Circle “When the Clipboard Gets in the Way of Care,” a space for daughters navigating the complex terrain of coordinating care with digital tools. Learn more at primaryrecord.com or find her circle on Daughterhood.org.
Kathy Lee, MPH is a healthcare operations and partnerships leader specializing in turning strategy into execution across health systems, value-based care organizations, and health tech. She’s also a caregiver who has tenaciously navigated dementia care and long-term services and supports, giving her a dual perspective: she knows how the system works, and she’s lived where it breaks down. That combination drives her focus on reducing friction for the organizations delivering care and the people trying to navigate it.