I am a health economist, trained to make sense of messy data. I generally work amidst a sea of numbers. But I’ve found that seeking out stories in health services research–those of doctors and patients–can help me anchor what’s truly important in research. These stories may also help researchers communicate the value of their work to others.
For the past seven years, I’ve worked on several of Medicare’s primary care models. First, I worked on the Comprehensive Primary Care Plus Initiative (CPC+) and more recently on the Primary Care First and Making Care Primary models. These models all seek to change the incentives facing primary care providers so that they can deliver better care to patients.
Yet, CMS has expressed the goals of these models in rather technical jargon (e.g., access and continuity, care management, comprehensiveness, coordination, and patient and caregiver engagement). I pore over data and calculate statistics to help quantify these concepts. However, I feel an important piece is missing from what we are collectively trying to achieve – the stories of doctors and their patients who deliver and experience these concepts.
Two recent books bring stories in health services to life
One was Dr. Illana Yurkiewicz’s Fragmented. Another was Dr. Thomas Fisher’s The Emergency: A Year of Healing and Heartbreak in a Chicago ER. In Fragmented, Dr. Yurkiewicz describes the obstacles to providing the primary care she believes her patients need. In The Emergency, Dr. Fisher shows what his days are like as an emergency medicine physician in the south side of Chicago. 
The focuses are different, but both books immerse the reader in what the doctors see, feel, and think as they care for patients. Their stories bring to life the challenges they face and the solutions they advocate. Many of these challenges and solutions are the same ones that Medicare is trying to address in their primary care models. I describe a few of these by recapping some of the stories in health services that Drs. Yurkiewicz and Fisher tell.
Fees for all services
One of CMS’s main goals is to move primary care away from the fee-for-service model of payment. Dr. Yurkiewicz describes the weakness of the fee-for-service model by telling the story of a patient who had leukemia when he was a teenager. To treat the ongoing health issues of this now adult patient, Dr. Yurkiewicz had to talk with the patient, dig through his electronic chart, map out a monitoring plan, write a note, message other doctors, research a rare disease, and circle back and contact the patient. However, only the time spent talking with the patient was paid.
In cases where Dr. Yurkiewicz ran a diagnostic test for a patient, she felt compelled to schedule another visit with the patient just to review and share the results with them. Otherwise, she would not get paid. For the patient, who may be sick, going back to Dr. Yurkiewicz’s office required the patient to take additional time off, commute to the doctor’s office, sit in a waiting room, talk with the doctor, and then commute back home.
CMS’s primary care models are different. They pay doctors to do this extra work. For example, CPC+ paid doctors significant monthly care management fees. These payments were independent of whether a patient came in for a visit. Primary care providers interviewed by the CPC+ evaluator talked about how these payments reduced financial pressures and enabled them to extend visits with their patients, talk to patients about what’s going on in their lives, understand all the factors affecting their health, and notice changes in their patients’ health over time. In other words, doing the work necessary to properly care for a patient.
Reduce “just in case” care
CMS’s primary care models also encourage continuity of care. In CPC+, this took the form of assigning a patient to a specific team of providers and ensuring they could access patient information. The ultimate goal was to encourage a long-term, trusting relationship between the patient and the primary care provider.
Dr. Yurkiewicz’s book shows the consequences of fragmented care. She describes a patient with chronic pain that led to a dependence on opioids. The patient experienced pain in her abdomen while Dr. Yurkiewicz was away. The on-call doctor sent the patient to the emergency department (ED). While there, the patient received high doses of opioids. Later, a diagnostic test cleared the patient of an intestinal disease the patient previously had. Though the on-call doctor was prudent, they unknowingly set back the slow and steady progress the patient had made on tapering her use of pain medications.
Dr. Yurkiewicz makes clear that this patient’s experience is the norm. Risk aversion often plays a role when a doctor is treating a patient they have not seen before. It often makes sense to send a patient to the ED, prescribe pain medications, or order an extra test “just in case”. But a long-term, continuous primary care relationship, where information about the patient is fully available, can relieve doctors of pressure to engage in such risk averse care.
Primary care in the emergency department
Dr. Fisher’s portrait of the ED further clarifies the mishaps that can occur under fragmented care. Dr. Fisher tells the story of a shift as the attending physician at the rapid assessment unit of the ED. There, he would meet patients and start their care by ordering tests and triaging them. He described having just three minutes to see each patient, and another three minutes on the computer to place orders and document the visit. Rarely could he ask the questions that, “might unlock why now, why today, why they [were] really here.”
That short time with patients is a problem. It was likely created, in part, by a high volume of patients who lack easy access to ongoing, continuous primary care. More than a quarter of emergency department visits in 2017, for example, were coded as less than “urgent”. Between the more urgent cases of a 33-year old pregnant woman with bleeding and the 68-year old woman with renal failure, Dr. Fisher also described care for a 27-year old man with back pain, a 35-year old woman with minor complaints, and a 23-year old man with general pain after a recent car accident. The result is that EDs are overwhelmed and patient care is fragmented.
20th century technology in the 21st century
One of the most frustrating challenges is how hard it is to share patient data between providers. Dr. Yurkiewicz described how she obtains a patient’s full medical files. She has to ask for their prior doctors’ locations, ask the patient to sign a release form, fax the form to other hospitals, receive potentially hundreds of pages of paper records, and sift through the records for the information she needs. Obtaining images of tests requires additional steps. This often involves receiving CDs in the mail, filling out an additional form, and waiting a day or so to see the images.
That we are stuck with CDs and fax machines is incredible given the vast amounts spent on electronic health records to enable easier data sharing. And it’s no surprise that some doctors choose to bypass these steps and, instead, order redundant and costly tests. This underscores the value of the health information technology (IT) support provided to practices as part of CMS’s primary care models. In CPC+, Medicare enlisted health IT vendors to help practices improve the exchange of information. Over half of practices thought that the health IT support was useful in improving primary care. In addition, practices also reported improved information sharing agreements with hospitals.
Tell me more
Health economists and other health services researchers have the tools to identify patterns in the data. However, we rarely get the opportunity to step away from our computers and meet the people that the data represent. This makes the stories that Drs. Yurkiewicz and Fisher tell all the more important. They are reminders that our work is more than just concepts to be measured and understood. Rather, they represent the suffering and healing of our fellow citizens. Stories in health services research help give our work meaning and help us avoid becoming lost in a sea of statistics. We can also relate these stories to better communicate our complex research to others.
