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Month: July 2021

Do Open Medical Records Actually Hurt Patients?

Imagine you’re reading a patient’s note that includes, “the patient is a 72-year-old male admitted for chest pain. He is a poor historian who states his pain began several months ago. . . .” When a resident physician says that a patient is a “poor historian,” Dr. Tiemstra lightly chuckles. If he’s speaking to the resident in person, he pauses the conversation to ask, “remind me, doctor, who is the historian?” An associate professor of clinical family medicine at the University of Illinois College of Medicine, he feels that this is a crucial teaching moment, and he doesn’t let it pass by.

Amusingly, I too came across this verbiage in a note from the emergency department. It stood out to me because I had not come across this term before, and it prompted me to look it up. That’s when I came across Dr. Jeffrey Tiemstra’s article in Academic Medicine in which he argues that this term is “increasingly distasteful.” I’m certainly inclined to agree, and after reading his piece, I was again reminded of the importance of actively listening to the patient’s story and piecing the the history.

The accepted usage of poor historian seems to be to describe a patient who, due to some type of neurological impairment, cannot readily communicate their concerns. However, as Dr. Tiemstra points out, it is often incorrectly applied to patients in the absence of “abnormal neurological findings supporting this label.” Instead, he sees the term being applied “to a patient who was unable to present a medical history in a form the resident could easily digest and record in the time allotted to collect it.”

Under increasing pressure to keep churning through patient visits, it’s certainly not an uncommon sentiment to feel constrained by time. And it’s inevitable that some patients are simply not going to be able to adequately summarize their own concerns and symptoms. After all, they’re not doctors. Patients don’t know how physicians think through a differential diagnosis, and most do not care to know. They just want to feel heard. And they want to feel cared for.

But more time is not the only solution to this. Perhaps, a better solution might be to stop bombarding patients with questions and just shut up and listen. Dr. Rita Charon, the pioneer of narrative medicine, likens listening to patients to reading a mystery novel, listening for the subplots, red herrings, and twists and turns. Just like in English class, she argues that doctors need to do a “close reading” of the patient’s story. When the doctor engages his or her curiosity, it becomes easy to build rapport with patients “while simultaneously obtaining critical data.” It involves a “totally different style of interview” with open ended questions and active listening rather than a barrage of questions aimed at eliciting the most information as quickly as possible.

Instead, she says, “you have to be so present, so alert, with your curiosity so intact. . . . And you have to assume that the narrators are going to mislead you. When a patient tells you what happened, you’re going to hear the opposite story from their mother or neighbor.” Dr. Charon argues that “doctors, like readers, have to take in all the different narratives and resist the urge to immediately say which is right with premature certainty.”

Think back to history class. While it may have been a subject that has long ago been shoved aside as an acrid memory, there is one question that is worth answering again. How do we even end up with a specific historical narrative? Well, it’s the historian that endeavors to chronicle the past. And it goes beyond just recording “a simple timeline,” because a good historian “sorts and organizes the past, identifying the important and meaningful events from the trivial, and then interprets the story in order to explain the circumstances of the present.” Sound familiar?

Dr. Tiemstra argues that the patient is not the historian, but rather it is the doctor who is, in fact, the historian.

This entirely flips the script. When the doctor is the historian, their role becomes more than simply documenting what the patient has said. The doctor must “collect the data, sort and organize it, and present it in the history of present illness in such a fashion that it clearly supports and explains [the] differential diagnosis.”

The patient’s narrative, and by extension the doctor’s interpretation of the story, is represented in the medical note.

“The note is really a story,” said Dr. Sara B. Fazio, a primary care physician at Beth Israel Deaconess who hesitated at first but is now one of the participating doctors. “The meaning of a story depends on the storyteller. Just because I write something down as my version of the facts doesn’t mean that they will be the absolute facts or that another person could not interpret those facts differently.” While physicians recognize that such differences in interpretation occur frequently, particularly across different specialties, patients may not. “A doctor’s note could come across in a very unexpected way to a patient even when the doctor wrote it with the best of intentions,” Dr. Fazio said.

Pauline W. Chen

But, let’s ask the salient question: what actually is the purpose of the medical note? The medical note serves a critical role: (1) for the doctor to communicate to themselves the patient’s story, treatment, and their thought process, and (2) to communicate this to other physicians.

Historically, these records were kept in the physician’s private journal. As medicine became more standardized throughout the 20th century, physician notes become “integrated into medical records” and another purpose was added, billing, according to Dr. Corey Meador, a physician and Health and Media Fellow at the Georgetown University Department of Family Medicine.

It was only in 1996 with the implementation of the Health Insurance Portability and Accountability Act, more commonly known as HIPAA, that a patient’s right to their medical record was codified in law. This changed the collective consciousness that medical records were yours, rather than the physician’s records.

“The electronic format introduced in the 1980s — and now used in most U.S. medical practices and hospitals — offered an arguably more efficient way to store and share medical data for use, primarily, by medical staff.” Now, due to federal regulations that went into place in April as part of the 21st Century Cares Act, the medical note is “being morphed into a tool to communicate with the patient” rather than just as a “tool for healthcare providers to track their work and communicate with each other.”

Now, patients can log in to their patient portal and see these notes immediately, without the presence of the doctor to help them understand the intricacies of medical communication. But, because of their original purpose, medical notes are “typically filled with medical jargon — which, for the most part, patients never saw.”

And therein lies the problem: patients are not doctors. They are not used to reading medical jargon and terminology. For some, it can be jarring.

Jargon can be a problem, but it also serves a purpose, said Hillary Shulman, a communications scientist at Ohio State University. “As our ideas become more refined, it makes sense that our concepts do too.” This language-within-a-language can be a timesaver, a way to precisely convey meaning, she said. However, it also runs the risk of starkly reminding people — even some well-educated researchers — that they aren’t “in the know.”

“It’s alienating,” said Dr. Shulman.

Katherine Kornei

For example, Elizabeth Preston tells the story of Glenda Thomas, who when she looked at her medical note from a previous visit, she saw that a nurse had written, “she denies recent illness.” This was disconcerting to her. To her, it “seemed to imply that she didn’t recognize her own condition,” which was certainly not the case. This is an example where standard medical language can cause confusion. The term deny, to most people, means refusing to admit to, but for healthcare professionals, it just means that she states that she does not have any recent illnesses to mention.

Preston notes that patients can “now see test results immediately, rather than waiting to hear results from their doctors. That unfiltered access “can be very distressing,”” especially if it contains something strange. It creates unnecessary problems with a simple solution: just let the doctor explain things during the visit. To achieve this in practice, however, is much more complicated.

The physicians to whom I’ve spoken to have all been vocally ambivalent about the concept. All of them recognize the value that transparency and openness provides to patients, but their concern is real.

I think it’s fine to speak to the patient in writing through some type of communication with instructions and a description of what was done. However, conflating the two into one document I don’t think solves the problem. I envision a time when the note is once again a refuge for the physician; a place where they can write down their thought process without having to worry about any other competing interests.

Dossier

“Clinicians open their notes to patients in a grand experiment in medical care,” by Elizabeth Preson, June 18, 2021. https://www.statnews.com/2021/06/18/clinicians-open-their-notes-to-patients-in-a-grand-experiment-in-medical-care/

“The Poor Historian,” by Jeffrey Tiemstra, June 2009. https://journals.lww.com/academicmedicine/fulltext/2009/06000/the_poor_historian.18.aspx

“This doctor is taking aim at our broken medical system, one story at a time,” by Sigal Samuel, March 5, 2020. https://www.vox.com/the-highlight/2020/2/27/21152916/rita-charon-narrative-medicine-health-care

“In a change, patients can now read the clinical notes written by their physicians,” by Corey Meador, April 10, 2021. https://www.washingtonpost.com/health/seeing-your-doctors-notes/2021/04/09/0b7ccfee-9096-11eb-bb49-5cb2a95f4cec_story.html

“Should Patients Read the Doctor’s Notes?” by Pauline W. Chen, July 22, 2010. https://www.nytimes.com/2010/07/27/health/27chen.html

“An Unforeseen Complication of Electronic Medical Records,” by Pauline W. Chen, April 22, 2010. https://www.nytimes.com/2010/04/22/health/22chen.html

“Why Doctors Hate Their Computers,” by Atul Gawande, November 5, 2018. https://www.newyorker.com/magazine/2018/11/12/why-doctors-hate-their-computers

“The Healing Power of Your Own Medical Records,” by Steve Lohr, March 31, 2015. https://www.nytimes.com/2015/04/01/technology/the-healing-power-of-your-own-medical-data.html

“Are You Confused by Scientific Jargon? So Are Scientists,” by Katherine Kornei, April 9, 2021. https://www.nytimes.com/2021/04/09/science/science-jargon-caves.html

“The Drama of Flight: One Radio Call at a Time,” by David Mamet, February 1, 2019. https://www.flyingmag.com/drama-flight-one-radio-call-at-time/

“The Tyranny of Metrics,” by Jerry Muller, 2018.

“How Stories in Medicine Connect Us,” by Sahil Nawab, July 10, 2020. http://www.sahilnawab.com/blog/how-stories-in-medicine-connect-us/

Visualizing Data is Rhetorically Powerful

The idea of a scatter plot to represent data in two dimensions seems to be obvious—something that has been in the common visual toolbox for ages. However, the concept of plotting data in multiple axes, or choosing how to display data in a way that “speaks directly to the eyes” is surprisingly novel. Each new type of graph comes about, often, as a result of needing a way to visualize data such that it teases out a result that would otherwise go unnoticed.

Fry uses an example that I felt was an incredibly powerful demonstration, and which I thought would be worthwhile to include below.

John Carter has only an hour to decide. The most important auto race of the season is looming; it will be broadcast live on national television and could bring major prize money. If his team wins, it will get a sponsorship deal and a chance to start making some real profits for a change.

There’s just one problem. In seven of the past twenty-four races, the engine in the Carter Racing car has blown out. An engine failure live on TV will jeopardize sponsorships—and the driver’s life. But withdrawing has consequences, too. The wasted entry fee means finishing the season in debt, and the team won’t be happy about the missed opportunity for glory. As Burns’s First Law of Racing says, “Nobody ever won a race sitting in the pits.”

One of the engine mechanics has a hunch about what’s causing the blowouts. He thinks that the engine’s head gasket might be breaking in cooler weather. To help Carter decide what to do, a graph is devised that shows the conditions during each of the blowouts: the outdoor temperature at the time of the race plotted against the number of breaks in the head gasket. The dots are scattered into a sort of crooked smile across a range of temperatures from about fifty-five degrees to seventy-five degrees.

Hannah Fry
Image courtesy of The New Yorker, 2021

The upcoming race is forecast to be especially cold, just forty degrees, well below anything the cars have experienced before. So: race or withdraw?

This case study, based on real data, and devised by a pair of clever business professors, has been shown to students around the world for more than three decades. Most groups presented with the Carter Racing story look at the scattered dots on the graph and decide that the relationship between temperature and engine failure is inconclusive. Almost everyone chooses to race. Almost no one looks at that chart and asks to see the seventeen missing data points—the data from those races which did not end in engine failure.

Hannah Fry
Image courtesy of The New Yorker, 2021

As soon as those points are added, however, the terrible risk of a cold race becomes clear. Every race in which the engine behaved properly was conducted when the temperature was higher than sixty-five degrees; every single attempt that occurred in temperatures at or below sixty-five degrees resulted in engine failure. Tomorrow’s race would almost certainly end in catastrophe.

One more twist: the points on the graph are real but have nothing to do with auto racing. The first graph contains data compiled the evening before the disastrous launch of the space shuttle Challenger, in 1986. As Diane Vaughn relates in her account of the tragedy, “The Challenger Launch Decision” (1996), the data were presented at an emergency nasa teleconference, scribbled by hand in a simple table format and hurriedly faxed to the Kennedy Space Center. Some engineers used the chart to argue that the shuttle’s O-rings had malfunctioned in the cold before, and might again. But most of the experts were unconvinced. The chart implicitly defined the scope of relevance—and nobody seems to have asked for additional data points, the ones they couldn’t see. This is why the managers made the tragic decision to go ahead despite the weather. Soon after takeoff, the rubber O-rings leaked, a joint in the solid rocket boosters failed, and the space shuttle broke apart, killing all seven crew members. A decade later, Edward Tufte, the great maven of data visualization, used the Challenger teleconference as a potent example of the wrong way to display quantitative evidence. The right graph, he pointed out, would have shown the truth at a glance.

Hannah Fry

The realization at the end was palpable, and I encourage you to read the rest. It harkens back to the original purpose of this blog—to highlight the power of visual rhetoric.

Dossier

“When Graphs are a Matter of Life and Death,” by Hannah Fry, June 14, 2021. https://www.newyorker.com/magazine/2021/06/21/when-graphs-are-a-matter-of-life-and-death

Are Graduate Degrees Still a Smart Idea?

It seems like a simple question on the surface, with an equally obvious answer. Yes, you might say, as do millions of Americans who pursue further education. And for the better part of the 20th century, nearly any graduate degree was a surefire way to advance your career and get a strong return on your investment.

However, as the Wall Street Journal recently demonstrated using an interactive tool, it appears that this age-old wisdom may not hold up in modern times. Certain schools and programs, especially in the arts, have significantly higher debt burdens compared to earnings. Even with the cachet of a prestigious Ivy League school, earnings may be slim.

Chalking this up to the universities bilking students of their money might be an exaggeration of a particular cause, but it appears that do see “master’s degree programs as largely unregulated cash cows that help shore up their bottom line,” according to Kevin Carrey. However, I think that there is another element that this argument overlooks: inflation. Since the 20th century, we have seen a divergence of income to cost of living and a divergence of productivity and income.

In combination, these factors contribute to a far more unequal society whereby the tools to achieve social capital are no longer attainable without a large amount of familial or dynastic wealth.

Image courtesy of the Wall Street Journal, 2021

I encourage you to check out the tool and input degrees from school that you are interested in attending, currently attend, or have attended in the past. While it is not comprehensive (some fields such as medicine only show a limited subset of schools and programs) there are definitely nuggets of information present in this data.

On a side note, I think it’s fascinating to see how well this information is represented visually. It makes the data far more compelling than a table and I especially like the case study animation as you scroll down the page culminating in the full data set.

Dossier

“Is a Graduate Degree Worth the Debt? Check It Here,” by James Benedict, Andrea Fuller and Lindsay Huth, July 15, 2021. https://www.wsj.com/articles/is-a-graduate-degree-worth-the-debt-check-it-here-11626355788

“‘Financially Hobbled for Life’: The Elite Master’s Degrees That Don’t Pay Off,” by Melissa Korn and Andrea Fuller, July 8, 2021. https://www.wsj.com/articles/financially-hobbled-for-life-the-elite-masters-degrees-that-dont-pay-off-11625752773

“Master’s Degrees Are the Second Biggest Scam in Higher Education,” by Jordan Weissmann, July 16, 2021. https://slate.com/business/2021/07/masters-degrees-debt-loans-worth-it.html

Can Flying Help Patients Beat Cancer

Image courtesy of the Wall Street Journal, 2021

In a recent article in the Wall Street Journal, Dr. Ateev Malhotra and Barak Richman wrote about the “brutal” trip Maki Inada makes for her cancer treatment. For patients who live outside of a large metropolitan area, it can be extremely challenging to balance receiving cutting-edge treatment with maintaining their jobs and home life.

Maki Inada is juggling a lot these days. She’s a biology professor at upstate New York’s Ithaca College, where she balances teaching and research on messenger RNA (suddenly a topic of global interest). She is a mother of a vivacious 10-year-old who just finished fourth grade, and that means lots of driving back and forth to gymnastics and swimming practice. And she has lung cancer. In April, after years of clean scans, the cancer was back. She just had major surgery and is starting chemotherapy again. She has a lot of appointments with her local oncologist and her oncology team at the Dana-Farber Cancer Institute in Boston.

One silver lining of the pandemic for Ms. Inada was that she didn’t have to drive to Boston for her appointments. She began having video calls with her doctors and planned to conduct many of her postoperative and oncology appointments via telemedicine. But regulatory changes in the past month have thrown a wrench in those plans. Dana-Farber told Ms. Inada she’ll have to be physically located in Massachusetts for a visit. She doesn’t have to go all the way to the doctor’s office, a 5½-hour drive each way. She can drive 3½ hours, cross the border into Massachusetts, pull over, and have a telemedicine visit in the car.

So for her next appointment, the grandparents drove 11 hours to Ithaca to watch their granddaughter, and Ms. Inada and her husband drove to Boston. After she had some scans at the cancer hospital, she quickly had a telemedicine visit from the lobby. But she had to skip one of her postoperative appointments because you can only drive back and forth so many times.

This sudden, severe and senseless inconvenience results from one of the historical vestiges of U.S. healthcare. The practice of medicine is regulated by state medical boards, which can license doctors only to practice medicine in their state. Traditionally, medicine is “practiced” where the patient is located. If Ms. Inada is in New York during an appointment, then her physician must be licensed in New York even if he is somewhere else.

Ateev Mehrotra and Barak Richman

While Malhotra and Richman argue for state medical licensure reciprocity, there are still certain situations that require the patient to be seen in-person. This is where organizations such as Angel Flight and similar can become lifelines for patients.

Josh Flowers, of the YouTube channel Aviation101, joined one flight and shared his experience in the video below.

Inada makes good use of telehealth services to be seen by providers, despite the tedious drive she must make to the Massachusetts border for legal reasons. In fact, I’ve written about the value of telehealth in the WFCC Newsletter. I suggested that we reframe the discussion of telehealth from reducing costs to increasing access to care.

This year, we have seen radical shifts in the way that healthcare is delivered. Early on, the COVID pandemic forced many non-urgent medical visits to be cancelled, including at the free clinics, helping healthcare institutions reduce the strain on limited resources. Almost immediately, the WFCC embraced the idea of virtual visits by setting up a free telehealth program. This idea was born out of the need to continue treating patients who would otherwise be almost completely disenfranchised from the healthcare system. Their ailments and conditions did not simply disappear overnight. Instead, telehealth became a lifeline for the uninsured and underinsured population in central Massachusetts.

[. . .]

Prior to the COVID pandemic, telehealth was seen primarily as a method to reduce costs. However, for free medical programs, telehealth should instead be seen as a method to increase access to care. It erases geographic boundaries and allows patients to not worry about transportation or scheduling time off from work or from childcare responsibilities. Looking at telehealth technology through this lens leads to a mindset that encourages the build-out of necessary infrastructure to reach patients and break down barriers to healthcare for disenfranchised populations. It becomes easy to justify the need to invest resources in public facilities, such as keeping public libraries open for longer hours or providing dedicated equipment and tutorials in multiple languages.

[. . .]

Ultimately, telehealth is not a substitute for in-person visits. While the circumstances may force virtual visits to continue throughout the foreseeable future, it is not sustainable for all types of conditions. Some simply cannot be treated through telehealth. Healthcare institutions should determine where telehealth can be an effective way to help increase care, for example, in treating conditions such as depression, hypertension, or diabetes.

[. . .]

“Telemedicine was a solution to an immediate problem,” says Dr. Ateev Mahrotra, but perhaps it can become part of the long term solution too. When in-person visits return, telehealth can be used to augment the care that free medical programs provide and get more patients access to the care that they need. To do so requires defining a comprehensive telehealth policy that addresses the needs of both patients and providers with the explicit goal of increasing access to healthcare. Patients who still require in-person care or do not have access to telehealth services can still come in. Others, particularly for follow ups where it can be challenging to get patients to come back, may instead opt for a virtual visit. Setting up the facilities to provide this level of effective telehealth services at the free clinics requires funding and up-front investment from the community, local governments, and other institutions.

Sahil Nawab

Dossier

“A Cancer Patient’s Brutal Commute,” by Ateev Mehrotra and Barak Richman, July 12, 2021. https://www.wsj.com/articles/a-cancer-patients-brutal-commute-11626129627

“Telehealth for Free Medical Programs, Now and in the Future,” by Sahil Nawab, April 26, 2021. http://www.sahilnawab.com/blog/telehealth-for-free-medical-programs-now-and-in-the-future/

“We Landed at the WRONG AIRPORT! – Flight VLOG #2 – IFR BOS to PHL,” by Matt Guthmiller, February 10, 2017. https://www.youtube.com/watch?v=lmgnqKsWXGI

“Getting there is HALF THE CURE – Angel Flight – Cessna TR182,” by Aviation101, November 17, 2020. https://www.youtube.com/watch?v=bEErswxxGSg

Double Slatted Wing

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