Ilana Yurkiewicz, MD, is a physician practicing oncology and internal medicine on the faculty at Stanford Medicine. She’s also an author and journalist and has been published in The Atlantic, Scientific American, Undark, The Best American Science and Nature Writing, STAT, and elsewhere.
In her first book, Fragmented: A Doctor’s Quest to Piece Together American Health Care, published by W. W. Norton, Dr. Yurkiewicz explores one of medicine’s daunting challenges – how patients, payers, policymakers, and providers must navigate the sea of medical record information that can be used to accelerate or become an obstacle in medicine’s primary mission – to heal.
Suppose we continue to avoid addressing the pitfalls of health-sector fragmentation. In that case, it will continue to increase costs, result in unnecessary hospital visits, negatively impact patient adherence and care disparities, and, even worse, lead to death.
Other bestselling books champion the concept of patient centricity – with information used to address medical needs swiftly. But what information is available and how it is accessed remains a human function – a system-wide hurdle. The desire to be healed and the readiness of healers to answer that call still faces a significant challenge – fragmentation.
“There’s an unspoken assumption when we go to see a doctor: the doctor knows our medical story and is making decisions based on that story. But reality frequently falls short. Medical records vanish when we switch doctors. Critical details of life-saving treatment plans get lost in muddled electronic charts. The doctors we see change according to specialty, hospital shifts, or an insurer’s whims. Physician Ilana Yurkiewicz calls this phenomenon fragmentation, and, she argues, it’s the central failure of health care today.” [W. W. Norton]
Medika Life offers readers this exclusive interview with Dr. Ilana Yurkiewicz, an award-winning author and dedicated physician with expertise in internal medicine, oncology and hematology, who unites the story of patients and physicians working to overcome one of the more significant challenges modern medicine faces. In her book, which outlines how information goes unshared, she highlights how “Critical details of life-saving treatment plans get lost in muddled electronic charts. The doctors we see change according to specialty, hospital shifts, or an insurer’s whims,” providing a much-needed perspective.
The Journey of a Physician-Author – To Illuminate and Heal
Gil Bashe: Congratulations on your work. Fragmented is a word I’ve used to describe the health ecosystem. You eloquently bring it all together in your book. You have been a journalist since your undergraduate years and now combine your love of medicine with writing. Could you give me some insight as a clinician, as a physician why you also wanted to be an author?
Ilana Yurkiewicz: I’ve always had those two careers going on in parallel. I knew from an early phase when I was in college that I wanted to become a doctor. I was always interested in both the sciences and the humanities. My interests were in combining them to make science and medicine accessible to everyday people.
I was a writer and an editor for the Yale Scientific Magazine, and since then, I’ve written in long and short form. I see the skill set I use in medicine and journalism as overlapping. When I counsel patients, I try to take complex ideas and break them down into information nuggets that people can understand. I do that when I’m in the exam room and when I write.
Bashe: In your book, you demonstrate a unique superpower to hone in on the patient you’re with. Is the real challenge about lack of access to information uniformly, not giving the clinical staff sufficient time to absorb patient information or a combination?
EMRs are Not a Book – They Remain a Puzzle
Yurkiewicz: It’s a very insightful question with a very long answer, but the short answer is that it is a combination. The electronic medical record (EMR) is not currently written in a format that is readable and meaningful to most providers. We first have the issue of interoperability, which addresses sharing records between different facilities. Sometimes I work in my clinic or the hospital, and I don’t have access to records from a doctor’s office down the street. So one issue is that records go unshared.
The second issue, though, is that even when all of the data is technically there – even if it’s all in the EMR – the EMR, as it stands, could be more organized. It’s little bits of discrete data put in different tabs that providers have to click, click, click, click through, trying to find a meaningful narrative themselves. I often tell my patients that the EMR is not written like a book. There’s no beginning, middle, and end. There are a ton of redundancies. A recent study showed that about 60% of doctors’ notes are identical to their previous notes.
To understand a patient’s full story, you are doing a lot of digging and clicking. You are trying to put pieces together manually to create a useful narrative about a patient that can help you make decisions. That process is labor-intensive and error prone.
Thirty percent of primary care doctors report missing findings even if all the information is in the EMR, because they’re clicking through so many tabs and need to know where something will be stored. So that’s problems one and two: how the EMRs are shared and organized. Issue number three, then, is time. You can imagine clicking through, say, 30 tabs to find one piece of data you’re looking for and then clicking into outside records and trying to collate them takes time.
When I meet a new patient in the clinic, if I’m doing it right, it takes about 30 minutes to do the preparation part of collating all the data into a narrative where I can think about next steps. And I’m only given 30 minutes per appointment.
So all this work starts accumulating for doctors, and we’ve gotten to a place where it’s unsustainable. We don’t have the time even if all the data is in one place. We need more time to sort through it in a meaningful way. I’ll add that one more study recently said that if primary care doctors did everything they’re supposed to do in a day, they would be working 26 to 27-hour days.
The Challenge of Navigating the Fragmented Health Ecosystem
Bashe: In the book, you discuss your interactions with patients across institutions like Cleveland. I wanted to get your read on the bigger fragmentation of the health system. When you think of information fragmentation, you say, ‘How does a patient navigate all this?’ How do you navigate the fragmentation as a clinician? You’re an expert in knowing the system and a visitor to the system. What do you think about that? I’m not asking you for the prescription to resolve fragmentation, but I think the readers would value your perspective on how patients must navigate the system.
Yurkiewicz: How do people do it? With incredible difficulty. Doctors do it with great difficulty, and patients do it with even more difficulty.
All sides need to communicate in a way that can help patients make the best decisions for themselves. At the same time, the cruel twist of irony is that patients are the ones who are currently expected to do all of the work of navigating the healthcare system, and inequalities fester. Some patients have become experts at navigating insurance and their different clinics and teams of doctors. They have learned to advocate for themselves by sending just the right message with phrasing that will push their doctors to communicate well. But not everybody can do that. And nor should they have to.
Recently one of my patients in her late 60s was diagnosed with mild cognitive impairment, which is a precursor to dementia. She lives by herself. She has no family to help her with day-to-day tasks, including navigating the medical system. She came to see me for a first appointment. I started running through a list of medical issues we had to address, and by the end, I gave her a to-do list. I wrote instructions down and said, ‘You call this number; you go to the lab in this location. Then you have to print out this data and bring it to the next place.’
I went through all these steps, and then she asked me them again. By the third ask, my heart was breaking as I knew she could not follow these steps; I could see the gulf of fragmentation enveloping her. I knew she would fall through the cracks if we didn’t change the approach. I simplified the list and put the highest-priority items on it. I said, ‘This time, do one and two, then come back to see me in a month, and we can try to address three and four.’
Tragically, our system is set up to let people like her fall through the cracks. The people who don’t have family members – patient advocates – are often unable to navigate this complicated system.
The Vulnerable Patient – Struggling to Understand and Be Understood
Bashe: Perhaps the most vulnerable and costly patients suffer because of the fragmentation. Now we have systems being created on systems that are being created on systems. What are your thoughts on how that addresses the spiraling fragmentation? Or are we just really adding to or splintering the fractured system? Is it getting further and further away from being pieced together, and are we seeing the rise of information anxiety or any hope of a cure for this fragmentation?
Yurkiewicz: We are seeing an explosion of fragmentation. We now have diagnoses and treatments for things that, 50 years ago, we never thought we could diagnose and treat. But the devil is in the details, and a patient’s ability to do well through a disease depends so much on what is often ignored – logistical hurdles.
The focus in the mainstream is often on treatment innovation rather than the details of whether the medication regimen is appropriately transferred from one doctor to another. Suppose the details of that life-saving treatment plan are written in a way in the EMR that everybody can see and access. Of course, it’s wonderful that we can treat illness better. But without an equal investment in connecting these logistical pieces, we are getting an explosion of information fragmentation, and patients can’t get the most out of these treatments.
I think in our public and political discourse, we need to emphasize equal investment in making sense of the information we already have and connecting it between doctors’ offices, between hospitals, and between one doctor to another within the same hospital.
The Power of Generalists and Specialists in Collaboration
Bashe: You’re focused on the human experience in medicine and oncology. You see medicine as the journey of a person – a patient – from their diagnosis, treatment, and then ideally post-treatment and dealing with the survivor experience. You’re also seeing your clinical journey through the eyes of the patient experience. How does that help you pinpoint fragmentation and help patients?
Yurkiewicz: Internal medicine is designed to look at the big picture. I trained first in internal medicine and afterward in oncology and hematology. When I was done with all that training, which was 14 years, including undergrad, med school, residency, and fellowship, I decided to open a primary care practice focusing on cancer patients and survivors.
My job is to take care of the whole patient. I’m privileged to take care of their cancer and everything resulting from their illness and treatment even years later.
In my training, I learned to look at a fragment of a patient’s narrative from the specialist lens. So when I was in internal medicine, my vantage point was very different from when I was in oncology. When I became an oncology fellow, I felt like I had crossed this invisible line where my training told me to look for clues suggesting cancer or a blood problem.
And so I learned how to look for those clues and hone in on a patient’s needs using my specialist lens. I’ve had to retrain myself to take a step back and look at the big picture. I try to see the whole patient and embrace how their concerns fit together.
Neither Hope nor Hype – Cautious Optimism
Bashe: You were already a great writer of magazine articles and op-eds. You were published in Scientific American a few times. The book is coming out, and certainly, people in the health system will read the book very carefully realizing how significantly fragmentation impacts care and cost. Try to project that people will read your book a year from now. What do you hope will be achieved through their experience of reading your words?
Yurkiewicz: There is a one-year goal and a longer-term goal. In one year, I want the book to help empower patients and family members to navigate the system better. I am an optimist, but unfortunately, I don’t think fragmentation in health care will be solved in one year. There are many factors and many incentives that make it very complex.
I’m hoping that in 20 years, my book will be closer to obsolete. Over the years, we can start to tackle each one of the factors of fragmentation toward a more sustainable healthcare system.
Bashe: Medicine is becoming increasingly specialized. Once upon a time, of course, gastroenterologists were gastroenterologists. Now you have clinicians at Stanford who only deal with the upper GI; others deal with the lower GI. You have cardiologists who are interventionalists. Others deal with lipids and so forth. Specialties pushed them to be experts. Are we getting to that level in medicine where doctors are becoming skilled in a tiny piece of the human body and patient experience?
Yurkiewicz: I once heard from a colleague in the sciences that we’re learning more and more about less and less until we know everything about nothing. And I wish that did not apply to medicine, but we’re heading in that direction because we promote specialization and sub-specialization.
For many reasons, it often leads to greater financial reward and respect within the medical hierarchy to become an expert in something narrow. And while specialization itself is not necessarily a problem, problems can arise when we have to reconcile different narratives that doctors tell themselves about a body part or an organ system.
Sometimes, no one person is looking at the whole patient, seeing if we can put the different narratives together into a unifying diagnosis or a unifying treatment plan.
I share in my book one story about a woman that I took care of in the hospital. She had leukemia and was very immunosuppressed due to chemotherapy, and she had an issue brewing in her lungs. She was gasping for air while I had to increase her oxygen support every day to the point that I had a frank conversation with her about whether she would want to go on a ventilator if her oxygen levels continued to worsen.
We had three teams of doctors on the case. There were infectious disease doctors, pulmonary (lung) doctors, and hematologists who specialized in her cancer. Each team came up with a perfectly reasonable assessment from their vantage point.
The infectious diseases team said, ’We’ve already treated her for most infections, so just throwing on an additional treatment is not going to help her. We’ve treated her with antibiotics and antifungals for a long time. We’ve treated the most highly likely things.’ And then the pulmonary doctors said, ‘Well, she already went to bronchoscopy. That didn’t reveal the diagnosis, so we shouldn’t do another one that’s going to be low yield, and it’s going to be risky because her platelets are low, and taking a biopsy could cause her to bleed.’
Meanwhile, the hematology team said, ‘She’s immunocompromised from chemotherapy. There’s no way to speed that up.’ Every single one of those analyses was perfectly sound. However, you put them all together, and we had a patient deteriorating before our eyes. Three narratives added up to say we should stay the course, which didn’t feel like a narrative that was the right one yet.
I share in the book what ended up happening to this patient, where I decided to treat empirically for the unlikely possibilities after each team ruled out the likeliest ones.
I don’t share this story to toot my own horn. But sometimes it takes somebody to take that step and say these reasonable assessments from each specialist’s point of view do not add up to a reasonable conclusion when taken together. An internist is trained to look for that big picture, but the empowering fact is that it can be a specialist who takes those proactive steps to look at what other specialists say about their patients and consider whether it adds up to a reasonable conclusion. It can even be patients and their family members at the bedside who advocate for their teams to come together and reconcile their assessments.
Again, it was not specialization itself that caused this problem. But we have to take that extra step to ensure that specialists reconcile their clinical narratives in a way that makes sense for the patient.
How to Obtain Fragmented
The public health urgency in the shadow of the pandemic continues to reveal serious vulnerabilities. We see inequitable access to care and lopsided disease and mortality burden among diverse communities as another tragic manifestation of racial injustice. We read about an increasingly fragmented care-delivery system splintering even further as new technologies such as AI and ChatGPT create expectations that physicians should see more patients daily – not dedicate more time to each patient.
Dr. Yurkiewicz’s book is a welcome, first-hand objective look at this struggling health system dedicated to helping patients while awash in information. Her candid expression of the patient and provider journey is vital in helping unite the disparate pieces.
Dr. Ilana Yurkiewicz’s book Fragmented: A Doctor’s Quest to Piece Together American Health Care, published by W. W. Norton, is available via the publisher, Amazon, and where all major books are sold. Follow Dr. Yurkiewicz on Twitter and LinkedIn.
[Special thanks to Carolyn Neugarten, editorial assistant, Medika Life, for her keen eyes and comments. Coming from a healthcare household, her interest in journalism and social action accelerated the publication of this interview.]