I started XpertPatient.com with one belief: a new cancer patient who understands their diagnosis and treatment options will achieve a better outcome. Years into this work, and as a two-time caregiver myself, I’ve come to believe something just as important — that real understanding rarely comes from a pamphlet, a search engine at 2 a.m., or even a well-meaning clinician rushing through a fifteen-minute appointment. It comes from a survivor who can look a newly diagnosed patient in the eye and say, “I’ve been there. Let me show you where to start.”

That belief is why we built XpertGuided, which we call the first-ever survivor-led cancer education experience. But I didn’t arrive at this idea in a vacuum. The more I’ve looked at what’s happening across oncology — in research, in hospital systems, in the data on peer support — the clearer it becomes that survivor-led guidance isn’t a nice add-on to cancer care. It’s becoming the standard the rest of health education needs to catch up to.

A record number of survivors — and a system still catching up

The scale of the need has never been larger. For the first time, 70% of people diagnosed with cancer are now surviving at least five years, according to the American Cancer Society’s most recent Cancer Statistics report — and for many cancers caught early, five-year survival tops 90%. As of early 2025, an estimated 18.6 million people in the United States were living with a history of cancer, a population projected to grow past 22 million by 2035. That’s growth of about 4 million survivors over the decade, nearly 1,000 more people living with a history of cancer every day. And because the American Cancer Society counts survivorship from the moment of diagnosis, an estimated 2.1 million new cases in 2026 means about 5,800 Americans begin that journey every day.

Dr. Arif Kamal, chief patient officer at the American Cancer Society, frames this as a fundamental shift: cancer care used to be defined by a “story of struggle,” he said, but is now shifting into “a story of survivorship.” Nicole Stout, DPT, the Society’s senior director of survivorship and wellness, argues that survivorship can no longer be treated as a phase that begins only after treatment ends. She contends that survivorship actually starts the moment of diagnosis, and that the health system needs to continuously monitor and support people from that point forward, not just after their last chemo session.

I read that and think: exactly. The hardest moment isn’t three years into survivorship — it’s the first week. The first phone call. The first time someone hears “biopsy” and “stage” and “options” all in the same breath. That’s the moment our industry has underserved the most, and it’s the moment I built my company around.

What survivors bring that clinicians often can’t

I’m not alone in this conviction — it’s showing up in how leading cancer centers are formalizing survivor input into research and care itself. At MUSC’s Hollings Cancer Center, survivor advocate Angela Timashenka Geiger has spent recent months representing the Survivorship and Cancer Outcomes Research (SCOR) Initiative at national research meetings, including the American Association for Cancer Research’s Scientist↔Survivor Program — a competitive training pipeline that embeds patient advocates directly into scientific conversations about the future of cancer care. Geiger now chairs SCOR’s Survivor Working Group and sits on its external advisory board. Of that initiative, she said what stands out to her is that a surgeon is personally leading the effort to make survivorship central to serious research and clinical practice.

The clinical literature backs up why survivor voice matters so much, and it’s the evidence base I keep coming back to. A pilot evaluation of the “Stronger Together” peer mentoring model — an adaptation of the Woman to Woman program originated at Mount Sinai — paired newly diagnosed breast and gynecologic cancer patients in Vietnam with trained survivor volunteers. The study found measurable improvements in depression, self-efficacy, and perceived social support, with the sharpest gains appearing within the first two months of contact — precisely the window when patients are most overwhelmed and least oriented. A broader systematic review of peer-to-peer cancer support programs likewise found that people affected by cancer offer each other something distinct from professional psychosocial care: support rooted in shared, lived experience rather than clinical training alone. Mayo Clinic’s long-running Pink Ribbon Mentorship Program for newly diagnosed breast cancer patients was built on that same premise — that survivors, working alongside the medical team, can reach patients in a way clinicians structurally cannot.

The thread running through all of it is one I’ve built my whole platform around: peer support doesn’t replace medical expertise. It fills the gap medicine alone can’t close — the gap between clinical information and lived understanding.

Taking survivor guidance online, at scale

Here’s where I think the industry still has work to do. The research above is powerful, but it mostly describes in-person or phone-based mentoring — a survivor and a patient, matched locally, meeting when a program happens to exist and a mentor happens to be available. That’s meaningful, but it doesn’t reach most people. Most newly diagnosed patients don’t have access to a hospital-run mentorship program in their first week. They have a search bar.

That’s the gap XpertGuided was built to close. It pairs survivor testimony with AI-powered personalization to meet patients at the single hardest moment of the journey: the beginning, when a diagnosis is brand new, the system feels impossible to navigate, and a late-night internet spiral can do more harm than good. If survivor-informed peer support measurably lowers distress and builds self-efficacy in a clinical trial setting, then I don’t think it’s a stretch to say the same principle belongs at the center of online health education generally — not as a sidebar or a “patient story” tacked onto a page of clinical facts, but as the actual architecture of how that education is delivered.

Why this model deserves to be the standard, not the exception

Put the pieces together and the picture is clear to me:

• The population needing this support is enormous and growing — about 5,800 Americans diagnosed every day, and a survivor population projected to grow by nearly 1,000 a day, per ACS estimates.
• The evidence is specific about timing — peer and survivor support delivers its biggest psychological benefit in the earliest weeks after diagnosis, exactly when most patients are navigating alone.
• Institutions are already formalizing survivor voice — Hollings’ SCOR Initiative and AACR’s Scientist↔Survivor Program show that leading cancer centers now treat survivor perspective as core to research and care design, not a nice-to-have.
• Digital platforms can encode that same principle at scale — which is exactly what I built XpertGuided to do: put a real, guided human perspective in front of every new patient, not just the fortunate few who find a local mentorship program.

None of this diminishes the role of oncologists, nurses, and care teams — the evidence is clear that survivor support works alongside clinical care, not in place of it. But as the survivor population swells past 22 million in the next decade, I keep coming back to the question Dr. Kamal poses about survivorship care broadly: whether patients get “more of their best days” — starting from the moment they’re told they have cancer, not months later, once the system finally catches up to them. That’s the standard I want every health education platform, including my own, to be held to.

If a treatment could cut healthcare costs by billions of dollars, reduce hospitalizations, and save well over 100,000 lives a year — with no side effects and no prescription required — every health system in the country would be racing to deliver it.

That treatment already exists. It’s education. And most of the healthcare system still treats it as an afterthought.

The bill for not educating patients

Start with health literacy — a patient’s basic ability to understand a diagnosis, a treatment plan, or a prescription label. Nearly nine out of ten American adults have some degree of difficulty navigating health information, and the price tag on that gap is staggering. A 2025 World Health Organization report and a 2024 analysis from Becker’s Payer Issues both put the cost of low health literacy to the U.S. economy as high as $238 billion every year, adding an estimated $4.8 billion in administrative costs for health payers alone. Patients with limited health literacy spend an estimated $143 to $7,798 more per year on healthcare than patients with proficient health literacy.

Then there’s the most literal form of unfilled education: patients who don’t understand what to do with the medications they’re prescribed. Roughly half of all medications for chronic disease are never taken as directed. Medication non-adherence contributes to about 1 in 10 hospital admissions and an estimated 125,000 deaths every year in the U.S. — more than car accidents, influenza, and pneumonia combined. Depending on which economic model you use, the direct and indirect costs of non-adherence run from $100 billion to as high as $528 billion annually, once you account for the hospitalizations, ER visits, and lost productivity that follow when patients don’t understand — or don’t trust — the plan they’ve been handed.

Patients are being handed instructions they don’t fully understand, at the exact moments they’re least equipped to absorb them.Risa Arin, Founder & CEO, XpertPatient

These aren’t two separate problems. They’re the same problem wearing different clothes: patients are being handed instructions they don’t fully understand, at the exact moments they’re least equipped to absorb them.

The evidence that education is the fix

Here’s the part that should change how we think about this. When researchers actually measure what happens when patients understand and engage with their own care, the results aren’t marginal — they’re some of the strongest cost-outcome relationships in health economics.

The clearest evidence comes from the Patient Activation Measure, a tool researchers use to score how much knowledge, skill, and confidence a patient has in managing their own health. A 2024 systematic review synthesizing dozens of studies worldwide found consistent links between higher patient activation and reduced healthcare utilization — fewer emergency department visits, fewer hospital admissions, and less overall system strain. A 2024 analysis of patient activation data from a diverse population of 2.4 million people in North West London found the same pattern in practice: patients with higher activation levels used healthcare more efficiently, with fewer unnecessary A&E visits and fewer GP consultations, translating directly into cost savings for the health system.

Put simply: patients who understand their condition and their options use the healthcare system more wisely — not because they’re avoiding care, but because they’re using the right care, at the right time, instead of ending up in an ER bed because nobody explained what to watch for.

Why the most powerful medicine keeps getting skipped

If the evidence is this strong, why isn’t education treated like the intervention it clearly is? Because unlike a drug or a procedure, it doesn’t fit neatly into a billing code, a fifteen-minute visit, or a hospital’s discharge checklist. It’s assumed to happen somewhere — in the exam room, in a pamphlet, in a nurse’s rushed explanation on the way out the door — but nobody owns it, measures it, or delivers it consistently. The result is a system that will spend enormous sums treating the downstream consequences of confusion, while investing almost nothing in preventing the confusion itself.

I see this gap every day in cancer and chronic disease care, which is exactly why I built XpertPatient.com: on the belief that a patient who actually understands their diagnosis and their options gets better outcomes — not eventually, but from the very first decision they make. Real patient education isn’t a pamphlet handed over on the way out the door. It has to meet people at the moment they’re overwhelmed, in language they can actually use, from a source they trust enough to listen to.

If a drug produced fewer ER visits, fewer hospitalizations, and lower costs the way patient education already has, it would be front-page news and standard of care within a decade. Patient education has already produced numbers like that — quietly, across dozens of studies, for years. The opportunity in front of healthcare right now isn’t inventing a new treatment. It’s finally prescribing the one that’s been sitting on the shelf, untapped, the whole time.

I’ve asked those two questions more times than I can count. I’ve been a caregiver twice — for people I love, in situations I didn’t choose and couldn’t fully prepare for. And both times, standing in a hospital hallway or sitting at a kitchen table covered in discharge paperwork, the question wasn’t “what’s wrong with them.” It was “what am I supposed to do now.”

If you’re asking that question too, here’s the first thing I want you to know: what you do matters enormously. And the second thing: the answer isn’t to do everything yourself.

Caregivers aren’t a nice-to-have. They’re the system.

Family caregivers are, quietly, one of the largest workforces in the country. In 2024, an estimated 59 million Americans provided unpaid care to an adult family member, friend, or neighbor — putting in 49.5 billion hours of work that would be worth $1.01 trillion if it were paid. That figure now exceeds total U.S. Medicaid spending and all private business healthcare spending combined. If family caregiving disappeared tomorrow, the formal healthcare system would not be able to absorb the gap.

And caregiving isn’t just logistics — it’s clinical. A 2025 systematic review in the Journal of Clinical Nursing examined randomized controlled trials on actively involving family caregivers in adult hospital care and found statistically significant benefits on readmission rates, hospital length of stay, and psychological distress for both patients and caregivers in multiple studies. That builds on earlier findings — still being cited and applied as recently as 2024 — that hospitals systematically integrating family caregivers into discharge planning, as required under the AARP-backed CARE Act now law in over 30 states, saw readmissions drop by roughly a quarter within 90 days. Not because caregivers replace medical staff, but because they’re the ones who see what happens after the doctor leaves the room — whether a prescription actually gets filled, whether a wound is healing wrong, whether someone is quietly skipping meals or medication doses out of confusion or fear.

You are not incidental to your loved one’s outcome. You are one of the biggest levers on it.Risa Arin, Founder & CEO, XpertPatient

You are not incidental to your loved one’s outcome. You are one of the biggest levers on it.

But the toll on caregivers themselves is real

I won’t sugarcoat this part, because nobody sugarcoated it for me. Caregiving takes a toll. In recent survey data, 87% of family caregivers report experiencing stress or anxiety, 78% report burnout, and more than a third report recurring depression or a loss of their own independence. Peer-reviewed research finds roughly one in three caregivers meets criteria for clinically significant depression, and nearly one in five is at risk of burnout severe enough to affect their own health.

That’s not a footnote — it’s central to this article. Because in my experience, the instinct that leads to burnout and the instinct that actually helps your loved one most are often the same instinct, pointed the wrong way: the belief that helping means doing it all yourself.

Let your patient help you back

Here’s the reframe that changed things for me, both times I was a caregiver: the person you’re caring for is not just a patient. They are still a person who wants — and often needs — to contribute to their own care. Taking over every decision and every task doesn’t just exhaust you. It can quietly strip away the one thing that helps patients most: a sense of agency. A 2024 systematic review of the Patient Activation Measure — the tool researchers use to score how engaged someone is in managing their own health — found consistent links between higher activation and reduced healthcare utilization across dozens of studies worldwide. And this isn’t just about patients: a 2023 study published in Nursing Research applied the same measure directly to family caregivers and found that caregivers with higher activation reported less depression and better adherence to caregiving tasks than caregivers with lower activation. Engagement protects the person doing the caring, too — which is exactly why involving your patient isn’t just good for them. It’s good for you.

So some of the most useful things you can do as a caregiver aren’t about doing more. They’re about making room for your patient to do their part, too.

Caregiving, at its best, isn’t one person managing another person’s illness. It’s two people — one of them scared and disoriented, the other one scared and exhausted — figuring out how to move forward together. The data backs up what caregivers already sense in their gut: your presence changes outcomes. But so does theirs. Asking “what can I do?” is the right question. Just make sure you’re asking your patient that question too.

Here’s a number that should stop every oncologist, every hospital system, and every health-tech company in their tracks: 93%. That’s the share of newly diagnosed cancer patients who, according to a University of Florida Health Cancer Center study, were exposed to at least one piece of misinformation about their disease or its treatment — most of them without even looking for it.

Misinformation isn’t a fringe problem in cancer care anymore. It’s the water everyone is swimming in. The question isn’t whether patients will encounter it. It’s what — or who — can cut through it.

The scale of the problem

The UF Health findings, led by behavioral scientist Carma Bylund, Ph.D., found that most patients encountered myths and unproven treatment claims passively — through social media feeds, casual conversations, or content that simply crossed their path. The researchers’ conclusion was blunt: clinicians should now assume every patient walking into a treatment discussion has already absorbed some amount of bad information, whether they went looking for it or not.

Here’s a number that should stop every oncologist, every hospital system, and every health-tech company in their tracks: 93%.Risa Arin, Founder & CEO, XpertPatient

It gets more specific — and more personal — when you look at survivors themselves. A study published in the December 2025 issue of JAMA Network Open surveyed nearly 1,000 adults with a history of breast cancer and found that more than 75% had encountered medical misinformation about what raises or lowers the risk of recurrence — everything from sugar consumption to deodorant to vaccines. This isn’t abstract misinformation about cancer in general. It’s misinformation aimed directly at people already living with fear of their disease coming back.

And the platforms aren’t neutral ground. Earlier research out of the University of Florida’s College of Journalism and Communications found that roughly one-third of the most popular cancer treatment articles shared on social media contained misinformation — and that those misinformation-laden articles consistently drew more engagement than accurate, evidence-based content. The algorithm doesn’t reward truth. It rewards attention. And fear-based cancer content is extremely good at capturing attention.

Why survivors are uniquely positioned to fight back

Here’s what gives me real hope, and it’s the same principle that drove me to build XpertPatient in the first place: misinformation spreads through trust, and so does the antidote.

Dr. Skyler Johnson, a radiation oncologist at Huntsman Cancer Institute who has partnered with the UF team on this research, has pointed out that people turn to online information — including from strangers — because they’re looking for comfort and connection as much as facts. A clinical pamphlet doesn’t offer that. A rushed appointment doesn’t offer that. But a survivor who has actually lived through the exact fear a newly diagnosed patient is feeling right now can offer both the facts and the connection at the same time — which is precisely the combination misinformation exploits and precisely what’s been missing from most patient education.

This is also why the UF team’s next step is so promising. Building on their misinformation findings, researchers are now piloting what they call an “information prescription” — a structured, vetted resource clinicians can hand patients at the moment of diagnosis, before misinformation has a chance to fill the vacuum. It’s a smart idea. But a prescription for information is only as powerful as how trustworthy and human that information feels once the patient actually opens it.

Survivors aren’t fighting misinformation with more information. They’re fighting it with credibility.Risa Arin, Founder & CEO, XpertPatient

That’s the gap I think survivor-led education is built to close. When XpertGuided pairs a newly diagnosed patient with survivor testimony and accurate, vetted guidance from day one, it isn’t just delivering facts faster than the internet can — it’s delivering them from a source patients are wired to trust more than an algorithm or an anonymous forum post. Survivors aren’t fighting misinformation with more information. They’re fighting it with credibility, which is the actual currency misinformation trades in.

What this means going forward

The research is converging on the same conclusion from two different directions. Clinicians are being told: assume your patient already has bad information, and get ahead of it with something trustworthy, fast. And separately, we’re seeing exactly why misinformation spreads so easily in the first place — it offers emotional connection that sterile medical information doesn’t.

Survivor-led education sits at the intersection of both findings. It’s fast enough to reach patients at diagnosis, before the misinformation spiral starts. And it’s human enough to compete with the emotional pull of a stranger on social media claiming to have “the real answer.” That combination — speed and trust — is exactly what the UF research suggests is missing from how most health systems currently fight misinformation.

I don’t think survivors can win this fight by out-shouting misinformation online. I think they win it the way they always have: by being the person a scared, newly diagnosed patient actually believes. That’s not a small thing. Based on what this research shows, it might be the most important thing.