At a recent ReDev Boston presentation, Kyruus co-founder, Julie Yoo, presented on the patient access problem facing patients across America. Many audience members expressed shock at the statistics around how difficult it is for patients to receive care throughout the US, stating that they had no idea it was “that bad.”
In many ways, Boston is one of the best suited cities to take on the technical challenges facing healthcare. With a unique blend of innovative hospital systems and an ever-evolving tech industry, we have young, ambitious teams working rigorously to “fix medicine.” However, after years of working in Boston healthcare IT, I am frequently reminded of the geographic disparities in patients’ access to quality medical care: young professionals in Boston have rarely experienced the patient access problem.
Bostonians are fortunate to be surrounded by many of the best hospital systems in the nation, all within a few miles of each other. No specialty, no matter how obscure, is unrepresented. We can take public transportation or a cab to get to our provider’s office. We have friends, family members, and partners who work within the medical industry and can offer advice and recommendations for care. We have a care team for our routine needs: a PCP, Dermatologist, OBGYN, Chiropractor, and Psychiatrist.
For much of the nation, accessing care is not so simple. Seeking out a specialist is only something you do for “big problems,” as it is too tedious, confusing, and expensive for routine issues.
When I was 19, I was diagnosed with thyroid cancer. I lived in a fairly small town in Missouri and was working on my undergraduate degree at the University of Missouri-Columbia. I suffered a neck injury that led to an emergency room technician noticing nodules on my thyroid gland, and those nodules turned out to be cancerous. Highlights of poor patient experience and care coordination I encountered include:
- My providers, split between two campuses, were forty minutes from my home and two hours from my college campus. Mass transportation was not an option.
- Under my parents’ insurance, I was required to see specialists referred by my PCP, and he was contractually bound to refer me to someone within the small community hospital, which prevented me from seeing specialists at a facility better suited to meet my needs.
- The various providers responsible for my care did not communicate and I found myself requesting printed copies of all of my appointment notes and test results to bring from one appointment to the next.
- I was never informed on my long term care plan, only the immediate next steps.
While I appreciate the initiatives behind treating patients as consumers, having a bad care team was not something I could solve through diligent online searching (though I tried). The idea of “shopping around” for better care never occurred to me because I trusted the health system to give me the best care possible. Years later, after moving to Boston, I found a reputable Endocrinologist and I learned that a number of preventative tests to ensure my cancer had not spread had been overlooked by my previous care team. As my new provider reviewed my records, she simply shook her head and apologized to me for the care I had received.
The landscape of rural care in America is fundamentally different from urban areas. Families are less likely to have good insurance coverage (if any at all), more likely to have a low income, and less likely to receive routine care. Also, patients have drastically less access to specialty care – urban areas average 263 specialists per 100,000 people, while rural areas average a paltry 30.1 This lack of specialty care in rural areas is largely to blame for an uptick in complications and deaths during pregnancy and childbirth in rural areas, while these numbers continue to go down in urban areas.2
It was only after receiving better care that I realized what a poor patient experience I had endured. As a consumer, I could only rate the care I received based on my own experience, and as a 19-year-old in Missouri I did not know what the “baseline” was for good cancer care. I didn’t die - was that really all that mattered? How was I supposed to know I was receiving bad care? What are the appropriate demands patients should have about their care and how they experience it?
Health systems need to explore different approaches to solving issues around both access and quality of care, and should consider the following questions:
- What tools can we provide patients to seek better care and how does that question change based on location?
- How does our approach to better patient access change when half of rural patients lack access to decent broadband internet?
- How can we factor in a patient’s holistic needs around access? (e.g., clinical expertise, availability of appointments, distance from their homes)
- How can we identify holes in our care teams to meet patient needs, regardless of region?
- How can we make it easier for providers to communicate care and put less burden on the patient?
- How can we better utilize our all-star specialists to make sure they’re seeing the patients who need them the most?
1Health Resources and Services Administration and Rural Health Information Hub. 2016
2Rural America's Childbirth Crisis: The Fight to Save Whitney Brown. Wall Street Journal. 2017