Our Experience on Facebook Offers Important Insight Into Mark Zuckerberg’s Future Vision For Meaningful Groups
By ANDREA DOWNING
Seven years ago, I was utterly alone and seeking support as I navigated a scary health experience. I had a secret: I was struggling with the prospect of making life-changing decisions after testing positive for a BRCA mutation. I am a Previvor. This was an isolating and difficult experience, but it turned out that I wasn’t alone. I searched online for others like me, and was incredibly thankful that I found a caring community of women who could help me through the painful decisions that I faced.
As I found these women through a Closed Facebook Group, I began to understand that we had a shared identity. I began to find a voice, and understand how my own story fit into a bigger picture in health care and research. Over time, this incredible support group became an important part of my own healing process.
This group was founded by my friends Karen and Teri, and has a truly incredible story. With support from my friends in this group of other cancer previvors and survivors I have found ways to face the decisions and fear that I needed to work through.
How long does it take to diagnose guttate psoriasis versus pityriasis rosea? Swimmers ear versus a ruptured eardrum? A kidney stone? A urinary tract infection? An ankle sprain?
So why is the typical “cycle time”, the time it takes for a patient to get through a clinic such as mine for these kinds of problems, close to an hour?
Answer: Mandated screening activities that could actually be done in different ways and not even necessarily in person or in real time!
Guess how many emergency room or urgent care center visits could be avoided and handled in the primary care office if we were able to provide only the services patients thought they needed? Well over 50% and probably more like 75%.
Primary Care clinics like mine are penalized if a patient with an ankle sprain comes in late in the year and has a high blood pressure because they are in pain and that becomes the final blood pressure recording for the year. (One more uncontrolled hypertensive patient.)
Burnout is one of the biggest problems physicians face today. We believe that addressing it early — in medical school — through coaching gives physicians the tools they need to maintain balance and meaning in their personal and professional lives.
We say that after reading comments from participants in our coaching program, “A Whole New Doctor,” developed at Georgetown University School of Medicine. This program, born almost by chance, provides executive coaching and leadership training to medical students, who are exactly the right audience for it.
Medical students tend to begin their education as optimistic 20-somethings, eager to learn and eager to see patients. After spending one or two years on the academic study of medicine, they move to the wards where they observe the hidden curriculum — a set of norms, values, and behaviors conveyed in implicit and explicit ways in the clinical learning environment.
In the hospital, convenience and expediency, deference to specialists, and factual knowledge tend to replace the holistic and patient-centered care that is lauded during the preclinical years. This new culture nudges some students to the brink of burnout and depression. Some consider suicide.
A lot of Americans think they should be able to make an appointment with a specialist on their own, and view the referral from a primary care provider as an unnecessary roadblock.
This “system” often doesn’t work, because of the way medical specialties are divided up.
If belly pain is due to gallbladder problems you need a general surgeon. If it’s due to pancreas cancer, you need an oncologic surgeon. If the cause is Crohn’s disease, any gastroenterologist will do, but with Sphincter of Oddi problems, you’ll need a gastroenterologist who does ERCPs, and not all of them do. Now, of course, if you’re a woman, that abdominal pain may actually be referred pain from an ovarian cancer, best treated by a GYN-oncology surgeon, which anywhere in Maine means a drive down to Portland.
The other day I saw an older man for a second opinion. He had been through one hand surgery for a small tumor many years ago in Boston, and another unrelated operation for a fracture in Bangor a few years ago. Then, after a non surgical injury, he developed stabbing pains in the same hand. Someone referred him to a neurologist for EMG testing, which was normal, and the man told me that was all the neurologist did, not a full consultation.
Keynote speech on the JAVELIN not going far enough to improve survival
The treatment landscape for metastatic renal-cell carcinoma has changed dramatically with the introduction of immunotherapies. Unfortunately though, we are promoting combinations over single agents without having much idea of added benefit of each drug. This is an important issue because when we combine two drugs, the only thing we are certain of are the added toxicities. PD-1 inhibitor nivolumab had improved OS when given in second line, however nivolumab was tested in combination with ipilimumab (not as a nivolumab monotherapy) in the first line trial. Now, pembrolizumab and avelumab have followed suit, although their combination partner was axitinib – a VEGF inhibitor. The control arm was sunitinib for both of the trials of pembrolizumab plus axitinib (KEYNOTE 426) and avelumab plus axitinib (Javelin 101). This is a little surprising because we are testing A B versus C, where both A and B haven’t been approved for the given setting – axitinib was approved for RCC in second line. Both these combinations improved PFS versus sunitinib but only the pembrolizumab combination has shown improved OS. However, I have doubts about the contribution of axitinib to these results. What would the outcome be if pembrolizumab alone is followed by sunitinib in second line? It is important to note that only one third of patients who discontinued sunitinib received PD-1 inhibitor subsequently in the KEYNOTE 426 trial. The important question for patients and clinicians would be to consider a survival difference had most of these patients received a PD-1 inhibitor subsequently. As for avelumab, the JAVELIN trial hasn’t reached as far as pembrolizumab and nivolumab have reached: The OS benchmark – so let’s reserve this combination until we see that benefit.
Have we successfully landed on the COMET?
We should remember that this combo-mania with PD-1/PD-L1 inhibitors may also backfire. Previously, the RCTs of nivolumab and pembrolizumab combos were halted in multiple myeloma for higher deaths in the combo arms. Another RCT IMblaze 370 also reports that atezolizumab, alone or in combination with cobimetinib, failed to improve survival versus regorafenib in patients with metastatic colorectal cancer. This time again A B failed versus C although C in itself is a drug with very marginal benefits in this setting. Also, I don’t understand testing A plus B combo when both A and B are unapproved for the disease.
A survey of 200 physicians under the age of 35 showed that 56% reported unhappiness with the current state of medicine. That number didn’t seem surprising to me at first. I was not particularly “happy” at the time of reading this survey either.
I’ve aspired to become an
oncologist for as long as I can remember. In oncology, despite my inability to
cure, I can always try to heal. I form connections with patients and their
families as they embark on a journey that is quite often their last. I learn
from my patients as much as, and at times more than, they learn from me.
But all of this is overshadowed by
a sense of heaviness that I frequently encounter as I enter the clinic room. That
sense of heaviness hits when a patient tells me of the time when they were placed
on a “brief hold” for more than half an hour in order to reach someone to get a
prescription refilled or reschedule an appointment. Or when their insurance refused
to cover the drug that I had prescribed to them. It is when I hear that clinic
visits or treatments are not scheduled due to insurance authorization delays. Or
when I’m asked about the cost of drugs and end up having to explain how nobody
By the time I hear these stories,
the “allotted time” for the clinic visit is coming to an end. The emotional
burden and physical symptoms of my patient’s cancer diagnosis or chemotherapy
side effects often not adequately addressed.
In the 20th century, hospitals completed their
transformation from the hospice-like institutions of the Middle Ages, into
large, gleaming centers of advanced medical expertise and technology that save
and improve lives every day. But an unintended consequence of hospitals’
dazzling capabilities is a staggering cost burden that’s proving toxic to the
Today, hospital care accounts for approximately 33% of the US’ $3.5 trillion annual health care expenditures, according to CMS. The drivers of hospital costs are complex and hard to tackle, including (but not limited to) market consolidation that enables price hikes, heavy administrative burdens, expensive technology and patient usage patterns.
In The Innovator’s Prescription, Clayton Christensen et al. explained another important driver of high hospital care costs: conflation under one roof of business models designed to address very different needs—such as the need for diagnosis of unique, complex conditions and experimental treatments, versus that for highly standardized services (for instance, some surgical procedures). This common phenomenon makes optimization of either business model very difficult, and thus drives up overhead costs.
One solution to this seemingly intractable
problem is to make home and community the default locations for care, where in
many circumstances it can be provided less expensively, more conveniently, and
more effectively than in a hospital. Fortunately, business model innovation
toward this end is gaining traction.
Fifteen years ago, as a medical student, I learned a
terrifying lesson about blindly using race-based medicine. I was taking care of
Mr. Smith, a thin man in his late 60s, who entered the hospital with severe
back pain and a fever. As the student on the hospital team, I spent over an
hour interviewing him, asking relevant questions about his medical and social history,
the medications he took, and the details of his symptoms. I learned Mr. Smith
was a veteran who ran into tough times that left him chronically homeless,
uninsured, and suffering from hypertension and diabetes. I performed a complete
physical exam, paying particularly close attention to his back. Upon reviewing
his blood tests and kidney function, I read the computer’s report: “normal.”
I felt confident as I presented Mr. Smith’s treatment plan
to my attending physician: I recommended a CT scan, ibuprofen for pain, blood
pressure lowering medication, and an antibiotic. My attending listened quietly,
reviewed the labs herself, and then firmly corrected every aspect of my
treatment proposal. “His kidney function is NOT
normal. What you want to do for him can further damage his kidneys. The lab
reported his creatinine as ‘normal’ because it has an algorithm that makes
faulty assumptions based on race.” Mr. Smith, according to the medical record,
was African American.
I almost harmed Mr. Smith because I hadn’t realized that the exact same creatinine level (the key metric for kidney function) yields two different reports based on whether you’re African American or not. The logic goes that because black people supposedly have higher muscle mass on average, healthy creatinine levels for those who check the “black” box is different from those who check other boxes. Physicians around the country continue to rely on this metric even when the black patient is thin, like Mr. Smith. This example of race-based creatinine levels to determine kidney function is a symptom of race-based medicine in general: (poorly defined) racial categories are often used as proxies to explain discrepancies in health outcomes by race, which is a potentially dangerous analysis. Mr. Smith’s case forced me to consider why race-based medicine is problematic and where our attention as healthcare providers should be directed instead.
What is certain is that health inequities persist along racial lines. African Americans and Hispanics have higher rates of diabetes, hypertension, and heart disease than other groups (Figure 1). American Indians and Alaskan Natives are 2.1 times as likely to be diagnosed with diabetes as white individuals and the prevalence of obesity in this population is higher than any other group. While it would be convenient to attribute these disparities to genetic difference, this is simply not the case.
In my mid-twenties, I was twice prescribed the common antihistamine
Benadryl for allergies. However, my body’s reaction to the drug was anything
but common. Instead of my hives fading, they erupted all over my body and my
arms filled with extra fluid until they were almost twice normal size. I subsequently
described my experience to a new allergist, who dismissed it as “coincidence.”
When I later became a nurse, I learned that seemingly “harmless” medications often cause harm, and older adults are particularly vulnerable. Every year, Americans over age 65 have preventable “adverse drug events” (ADEs) that lead to 280,000 hospital stays and nearly 5 million outpatient visits. The Lown Institute in Boston draws attention to this underrecognized problem in their recent report, Medication Overload: America’s Other Drug Problem. Policymakers, patients, and health professionals must act, because over the next decade, medication overload is predicted to cause 4.6 million hospitalizations of older Americans and 150,000 premature deaths.
Nearly half of all older adults take at least five
prescription drugs, a 300 percent increase from 25 years ago. The
more drugs we take, the likelier it is that one of them, or some combination,
will cause serious harm. When you add in non-prescription medications,
including over-the-counter drugs like ibuprofen and Tylenol, as well as
vitamins and herbal supplements, the potential for harm only goes up.
I’ve seen this in my
work. It is not unusual for elderly, very ill patients on hospice to have
prescriptions for 20 to 30 drugs. Several of their medications may treat the
same problem, amplifying any serious side effects. Blood pressure medications provide
a good example. As older patients become more debilitated, lose weight, and are
taxed by other health issues, the effect of these medications can intensify,
severely lowering blood pressure, and causing the patients to fall. Indeed, if
I am following up with a hospice patient who has fallen, the first thing I
check is their prescription medications for hypertension.
By SAMYUKTA MULLANGI MD, MBA, DANIEL W. BERLAND MD, and SUSAN DORR GOOLD MD, MHSA, MA
Jenny, a woman in her twenties with morbid obesity (not her real name), had already been through multiple visits with specialists, primary care physicians (PCPs), and the emergency department (ED) for unexplained abdominal pain. A plethora of tests could not explain her suffering. Monthly visits with a consistent primary care physician also had little impact on her ED visits or her pain. Some clinicians had broached the diagnosis of functional abdominal pain related to her central adiposity, and recommended weight loss. This suggestion inevitably led her to become defensive and angry.
our standard screen for safety at home had been completed long ago, I wanted to
probe further, knowing that many patients with obesity, chronic pain and other
chronic conditions have suffered an adverse childhood – or adulthood –
experience (ACE). Yet, I hesitated. Would a busy primary care setting offer enough
latitude for me to ask about a history of trauma when it can occur in so many
forms, in so many ways and at different times of life? Furthermore, suppose she
did report a history of trauma or adverse experience. What then? Would I be
able to help her?
I began: “Jenny, many patients with symptoms like yours have been abused,
either emotionally, physically, or sexually, or neglected in their past.
Sometimes they have suffered loss of a loved one, or experienced or witnessed
violence. Has anything like this ever happened to you?”
yielded our first breakthrough. Yes, she had experienced neglect, with parents
who were separated for much of her childhood, and then later divorced. She had
seen her father physically abuse her mother. With little parental oversight,
she had engaged in drug and alcohol use throughout her teenage years. But, she
wanted to be sure we understood that this was all behind her. She had gotten an
education, was in a committed relationship, and had a stable job as a teacher.
That part of her life was thankfully now closed.