My Fight with Breast Cancer Drove Me to Fix Primary Care
What it really takes to get people obsessed with their health.
I had gone in for a sonogram to check on a lump in my left breast. I was young, no family medical history — I didn’t think anything of it. They took a biopsy just in case. A few days later, they called to tell me it was cancer. The lump I had felt for almost a year, one that my gynecologist had said was nothing, was malignant. Confused and scared, I went back in for more tests.
Was this really happening? Could I die from this? Would I need chemotherapy and lose all my hair?
It turned out I had Stage 2 breast cancer. I was 23 years old. I did lose my hair, but that was far from the worst of it.
My family stepped up in ways I could have never imagined. My aunt, an ER doctor, became my trusted advisor and medical researcher. My older sister managed the endless admin — coordinating doctor visits, keeping track of possible outcomes, and generally being a master of logistics. My younger sister provided much-needed comic relief — she named my tumor Ellen. We hated Ellen. My boyfriend (now husband) was unwavering, despite my guilt for burdening him with the responsibility no 23-year-old kid should have — but that’s a story for another day. My parents tried to hide their fear with smiles and reassurance. I did, too.
We put together a rockstar medical team. My doctors were, and still are, my superheroes. I felt like the luckiest girl in the world to have them in my corner.
But that’s the thing. I was lucky.
From identifying the best doctors and securing impossible-to-get appointments, to constantly battling with insurance, I had the emotional and financial support to successfully navigate the black hole that is our healthcare system.
The care I needed didn’t end there though. I quickly realized that my doctors weren’t in touch, which meant I was responsible for coordinating my care and making sure that all bases were covered. It’s surprisingly rare for specialists to collaborate on a patient’s care when they’re not part of the same practice. Sharing records is usually the extent of it, a tedious and outdated process that for some mysterious reason requires 8–10 business days.
I had to be my own advocate. I came prepared with well-researched questions, took copious notes, and, like a broken record, relayed my medical history and treatment protocol from one doctor to the next. Medical care — from diagnosis to treatment — is siloed.
More than anything, the fear and loneliness I felt quarterbacking my care compelled me to contemplate what a seamless patient experience would look like.
After completing treatment, I graduated to what they call “survivorship” — a veritable no-man’s land. Today, 6 years cancer-free, I still find myself confronting questions that require continuous research and management. And again, this is as a lucky patient. I have a degree in biomedical engineering. I was the valedictorian of my graduating class. But I had no clue how to handle the responsibility of my own health.
None of my specialists could advise me (health optimization fell outside the scope of treatment). Left to my own devices, I turned to podcasts and journal articles that explained the role of nutrition in reducing cancer risk. I googled the benefits of everything I ate and adapted my diet accordingly. (If you knew my eating habits growing up, you’d understand why this was such a feat.)
The more I learned, the more empowered I felt. But the internet doesn’t discriminate between science and trend. What I really needed was proper supervision and guidance. Otherwise, there was a chance I would do more harm to myself than good.
Naturally, I set out to find a primary care doctor, a “PCP” — someone I could trust to 1) coordinate my care, 2) serve as a sounding board, and 3) support me in optimizing my health.
But with each new doctor’s visit, I left feeling more frustrated and dissatisfied. And believe me, I tried them all — the traditional, in-network PCPs all the way up to the famous concierge doctors that charge a month’s rent for a not-so-significant difference. In the end, they were all missing the point.
Most of all, these PCP’s lacked a comprehensive understanding of patients’ needs. I knew the only solution that I could rely upon to successfully incorporate this perspective was my own — a doctor’s office designed through the lens of a patient. Finally.
Primary care today has been reduced to a simple checklist — as long as I passed their baseline exams, there was nothing more they could, or wanted, to do. Their body language said it all: wrap up as quickly as possible to get to the next patient. But I had my list of questions. I prodded about nutrition and exercise, asked for their thoughts on extended fasting, the keto diet, acupuncture.
Their responses were vague at best. I was not obese, followed a “healthy” diet and exercised enough. Notwithstanding these fool-proof, ultra-specific guidelines, I realized something was missing. The conventional approach to prevention seemed outdated. But thinking outside the box was clearly unwelcome.
Alas, I became a “difficult patient” — my curiosity and discontent disturbed their formulaic cadence.
Our doctors are not the ones at fault. Challenging the status quo and offering patients a proverbial seat at the table are luxuries most physicians cannot afford. Our healthcare system just isn’t setup for that kind of care.
Why?
The incentives are all wrong.
Doctors are compensated through a fee-for-service model, meaning they get paid per visit. This motivates them to flip their exam rooms as quickly as possible to maximize the number of patients they see in a day. More visits, more profits. Quality of care is not the primary metric.
But the truth is, doctors became doctors because they are curious and do care about treating people. It’s their misaligned revenue model that has denied them of the time, flexibility, and support needed to perform at their best and do what they love.
Prevention requires an integrative approach.
Let’s start with the facts: 70% of disease in the US is chronic (e.g., heart disease, cancer, diabetes, stroke, dementia, autoimmune diseases), and 60% of the population has at least 1 chronic disease. And yet, chronic diseases are often preventable. So how did we get here?
Effective prevention requires an integrative, mind-body approach, a lens most PCPs don’t have. Instead, they stick to what they know: conventional treatments developed by the pharmaceutical industry to mask your symptoms and max their profits. To truly improve outcomes, doctors need to look to the system, not the symptom. This requires additional training and longer visits with patients — time they don’t have.
Everyone is drowning in admin.
This deep dark healthcare hole requires a significant amount of time and patience to navigate. Anyone who’s dealt with a health crisis understands the level of work it entails: consolidating records, sharing records, fighting with insurance, researching specialists, playing phone tag because it’s impossible to ever call your doctor back directly… the list goes on.
Doctors are burnt out and their office staff is swamped. With no one to turn to, patients are left banging their heads against a wall and fending for themselves. An antiquated, bureaucratic and inefficient system has left physicians and patients alike exhausted, neglected and unhealthy.
A survey conducted in 2018 by the Kaiser Family Foundation found that 45% of 18- to 29-year-olds don’t have a PCP. These numbers are frightening but warranted, as we continue to see less and less value in primary care. Instead, we’ve settled for more expeditious urgent care options, turning directly to specialists when things get really bad.
The problem with this approach is that patients no longer have a physician who really knows them, understands their health history, and can guide them when crises hit. Instead, we’ve created a fragmented a costly system. Small problems that could have been prevented turned into big problems — expensive problems.
Until we reimagine the way we do primary care, this will only get worse.
I set out to fix primary care from a patient’s perspective.
When I met my co-founder, Tandice, we bonded over our shared frustrations as patients. Like anyone forced to confront the healthcare system (i.e., everyone), we had spent way too much time, money, and energy mastering our health. After much venting and brainstorming, we were convinced that we could do primary care better.
Over the coming months, we solidified our mission for The Lanby: a members club dedicated to meeting the needs of today’s modern, sophisticated patient. That meant building a practice from scratch to deliver an integrative approach to care and a hospitality-driven patient experience. We set out to create the doctor’s office we always wanted, not only as patients who had been through health crises, but more generally as patients living in the 21st century.
Our vision is two-fold:
Reclaim the role of primary care as a true first line of defense.
Done right, primary care can address 80% of health needs and reduce healthcare costs by 33%. But to enable primary care, return it to its original glory, and actually make it preventive, we must bridge the gap between conventional medicine and wellness. The proof is in the pudding. Research has shown that diet, exercise, sleep, and mental health all impact our overall health.
So we need to rethink everything, from the way we conduct a baseline visit, through every aspect of the patient journey. We know PCPs aren’t trained in all of these areas, and while they’ll always be my superheroes, they don’t have unlimited bandwidth.
So what’s the solution? A team-based approach to primary care. We’re bringing together the complementary skills of a physician, a wellness advisor, and what we’ve termed a “concierge manager” to support patients at every turn.
Being a “team” demands more than sharing an office. They’ll be assessing patients, developing care plans, and measuring progress as a team. Say goodbye to siloed, piecemeal treatment and open loops. Say hello to coordinated, comprehensive, and continuous care.
Perfect the experience for both patient and physicians.
For Patients: The experience at the doctor should be so good that it’s the highlight of our day. And why shouldn’t it be? An opportunity to be intellectually curious, understand your personal health data and explore new strategies to better ourselves. Interactive visits tailored to our needs and goals. A community that empowers us through curated speaker series, panel discussions, and wellness events. Once patients enjoy the process of bettering their health, we’ll start to see better outcomes.
For Physicians: By charging one flat fee, our physicians can focus their time and efforts on what they do best — treat patients. Physicians will also have more time to think about prevention when admin no longer consumes their day. Our dedicated concierge managers will take this on instead — record consolidation, coordination with specialists, insurance navigation. They’re the solution to getting healthy, without the burnout.
The industry has made significant advances towards the consumerization of healthcare, specifically around digital health. But these solutions continue to promote a siloed experience.
When it comes to changing the value of primary care, the scope of what medicine can offer, the way we assess overall health — we need a solution that connects the dots for patients and takes the work out of getting well. Good primary care should be just that.
It requires going the extra mile to be that quarterback and motivate patients to excel. So, we’re going an extra 100 miles. We’re blowing the value and the experience out of the water to make patients obsessed with their health.
As the first practice built by patients, it’s time we flipped the power scale. We’ve been at the whims of payers and providers for too long. At our most vulnerable, we’ve been our most powerless.
As consumers, we have lots of ideas for what good care delivery should entail. It’s only prudent that we be included in crafting that experience. In building the backbone of The Lanby, we knew our ultimate success would lie in having patients as stakeholders. Patients, our time is now. We’re not just giving you a seat at the table. We’re seating you at the head of our table.
Let’s get well, better.
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