When Lost Paperwork Can Mean Life or Death
What my mishandled cancer diagnosis reveals about opportunities in health care.
I was diagnosed with malignant melanoma when I was a teenager. It’s the rarest, deadliest form of skin cancer. The disease is typically easy to detect and highly treatable in its early stages. But left unchecked, tumors grow aggressively and spread until, in sometimes as little as six weeks, the cancer becomes incurable.
“Let’s just do a quick biopsy. We’ll let you know if anything’s wrong,” my dermatologist said, assuring me the procedure was routine. A biopsy is scary for a teenager, but by the time I got home, my anxiety had completely dissipated. In fact, I thought nothing of it for months — the doctor said she would reach out if anything was wrong, and she hadn’t reached out.
But something was very wrong. Months later, my dermatologist frantically reached me on the phone and directed me to set everything down and come to the hospital for emergency skin surgery. I was floored.
Why hadn’t I known earlier? Why did my dermatologist wait months to inform me my skin was being taken over by a hostile cancer?
Unfortunately, the poor timing of my diagnosis was a result of lost paperwork and poorly coordinated medical teams. The results of my biopsy simply fell through the cracks. Suddenly my summer aspirations were swiftly usurped by surgical suites and bed rest — for no reason other than administrative inefficiency.
I can hardly blame my doctor for the slip-up because our current health care structure does not incentivize practitioners to ensure continuity across the system. Like many of her peers, my doctor is confined to her own silo within a much more byzantine system. Administrative, reimbursement and regulatory burdens deter enterprising physicians from maintaining their own practices, so the industry consolidates into behemoth organizations, struggling to internally innovate.
In a clinical setting, these inefficiencies lead to worse survival rates. Anyone who’s ever been sick or worried about a loved one knows how critical every detail can be. And while we’ve made remarkable advances in medical science and technology over the past decade, inefficiencies prevent us from achieving commensurate health outcomes.
Luckily, the future is bright: As a healthcare VC-turned-entrepreneur, I meet fledgling companies every day who are making bold strides to solve complex medical problems. Innovators are tackling chronic disease, cancer, preventable illness, and even trying to correct mistakes like misplaced pathology reports.
Today’s consumers are more sophisticated and digitally native than ever before. To meet their growing expectations, companies are making record-breaking investments in digital health care. The bar will only get higher as these digitally native millennials begin starting families, accessing more health services, and finding themselves on the hook for healthcare bills. One way these new entrants are redesigning the health care system is by linking fragmented providers to form more connected networks — all revolving around individual patients.
So how might countless experiences like mine — misplaced paperwork, misdiagnoses, and expensive hospital inefficiencies — be remedied in a new digital-first, patient-centered system? Here are some things health care entrepreneurs must achieve if we want all stakeholders to benefit from a redesigned system:
Inject competition
In most robust markets, the onus is on service providers to deeply understand customer needs and endeavor to meet them. It’s time to debunk the precept that health care doesn’t apply to this rule. Patients will increasingly choose providers and care settings for convenience, brand loyalty, and overall experience — whether through a brick-and-mortar clinic or an app.
“Hospitals don’t want to kill patients, or even serve bad food. They just don’t face the same discipline that consumer-driven businesses do,” writes David Goldhill in Catastrophic Care.
Yelp recently made its foray into healthcare, posting comparative statistics to help expectant mothers choose the right hospital for giving birth. And Docent Health offers hospitals an outsourced team focused solely on ensuring patient-centric care, from intake to discharge.
In the current milieu, providers understandably grumble at online reviews about services beyond their purview: “The lab failed to follow up,” or, “I sat in the waiting room for two hours.” But transparent feedback builds much-needed competition and encourages providers to seek new ways to “own” the end-to-end patient experience.
Empower the patients
Illness is scary. It renders us particularly vulnerable to primal submissiveness: I spent more time chatting with an Amazon representative yesterday, peppering him with questions about my produce purchase, than I did exchanging inquisitive dialogue with my surgeon before a potentially life-threatening operation.
Patients report feeling like they’re “not in charge¨ when they visit the doctor because they are accustomed to listening passively rather than collaborating on treatment designs. On average, physicians interrupt patients within 18 seconds of the conversation beginning, which often leads to misdiagnosis, writes Jerome Groopman in How Doctors Think. He urges physicians to “activate” their patients, allowing them to feel free — if not eager — to challenge them.
Medical providers by no means bear full responsibility for patient success: Good health requires effort exerted on both sides of the exam room. Groups like Iora Health deploy a team-based clinical model with assigned responsibilities, arming patients with the right tools at the right time to promote their own long-term wellbeing.
Coordinate care
Initiatives to curb medical error typically focus on modifying specific practice patterns. While effective, these initiatives target only one pain point in a fragmented ecosystem.
Health care companies must broaden their initiatives and give clinicians greater accountability for the overall patient experience. One way this is getting done is through collaboration technology, which synchronizes clinicians across the care continuum to create a more cohesive and uninterrupted patient experience.
We also know that health outcomes are demonstrably better in medical home care models that integrate different clinical services into one continuous system. Startups like Concert Health and BoulderCare use technology to bring behavioral health providers into primary care offices, meeting both mental and medical needs.
Fortunately for me, my melanoma was successfully treated despite the lost paperwork and the months long delay in my diagnosis. But these inefficiencies can mean the difference between life and death for somebody else. Health care startups are beginning to address these inefficiencies, but they need to do so carefully. The best ones are not trying to disrupt everything at once, because human behavior is hard to change and one must be strategic about deciding what needs to be overhauled. They also remember that technology solutions are not a panacea. Suboptimal IT belies deeper structural problems, like misaligned reimbursement incentives. The cornerstone of healthcare services is the patient-provider relationship: technology should seek to strengthen it, not replace it.
I remember sitting on the steps of the Capitol in 2010, anxiously awaiting the final vote on healthcare reform. Soon after, poring over hundreds of pages in a three-ring binder analyzing the historic legislation, I realized the opportunity health care startups have to fill the gaps and inefficiencies in our endlessly complicated system.
Every error and inefficiency represents an opportunity for transformational change to make meaningful impact, and I can’t wait to see what comes next.
Creative Art Direction by Anagraph. Illustration by Rune Fisker.
