Roger Holzberg is the co-founder, along with Leonard Sender, MD, of Reimagine Well, a company that designs and builds immersive healing programs for hospitals and treatment centers. The Infusionarium™ platform empowers patients to receive treatment in the place they believe will best heal them, then empowers them with enhanced educational “Learn Guides” and a safe support community for their patient journey. He served as the first (consulting) Creative Director for the National Cancer Institute (NCI). The “evolution” of Cancer.gov, the NCI Facebook, Twitter, Mobile and YouTube channels are all projects that his creative team took from concept through launch. Previously, Roger spent 12 years as an award-winning Creative Director / Vice President at Walt Disney Imagineering where he had the opportunity to lead the creative development for a broad portfolio of projects ranging from PlayStation® games to theme park icons and multiple Disney World Celebrations; from mass audience interactive experiences and rides to the MMOG Virtual Magic Kingdom. In “classic media,” he has written and directed feature films and television, but is genuinely proud of researching and writing the IMAX film “The Living Sea” (Academy Award nomination for documentary). Roger is a father; a 15-year cancer survivor; and a competitive triathlete (3 events yearly), using the sport to raise research dollars for causes he supports.
1.What prompted you to start Reimagine Well?
As a cancer survivor I had a firsthand look at how “unhealing” the patient experience was in the US. At the time I was diagnosed I was a Vice President and Creative Director at Walt Disney Imagineering. I put together a group of volunteers from Disney that were either cancer survivors or caregivers and we worked on projects that ranged from a support platform to contributing to the redesign of the lobby at Children’s Hospital Los Angeles, and then doing the “living with” stories for the launch of Livestrong.com and adapting a Disney attraction called “Turtle Talk with Crush” for use with pediatric patients at Children’s Hospital of Orange County. I was then recruited to be the first (consulting) creative director at the National Cancer Institute, redesigning Cancer.gov and taking the institute into social media and story telling. All of these experiences planted seeds in their own way for re-envisioning the healing environment.
2. You had an interesting journey as a Disney Imagineer, what was that like? And How does that inform how you approach healthcare?
Back in 1964 in Flushing Meadows New York, when I was eight years old, I attended the Worlds Fair and saw “Great Moments With Mr. Lincoln”, the first audio animatronic figure and nearly tore my dad’s jacket sleeve off when I asked ‘how did that happen?’ His response stuck with me: “A man named Walt Disney invented that.” That was the beginning, and since then I have been drawn to what’s known as “experience design” (as opposed to film and consumer product design). Experience design is so much more powerful when a medium is multi-dimensional. I ended up taking college courses in design and finishing up at the California Institute of Arts. In my early career in the entertainment industry I worked in special effects and production design, and wrote large format IMAX films. The educational expansion of the Imax films led to an opportunity to help build “Knowledge Adventure” and the “Jumpstart” brand. I was then recruited to Disney Interactive to be their first creative director. The Imagineering division of Disney recruited me to work on the Millennium Celebration and lead the creative teams on the 100 Years Of Magic project at all four Disneyworld theme parks. After 9/11 we saw a big retraction in vacation travel and I had the opportunity to build a team and lead a project called Virtual Magic Kingdom. This had 5 million children interacting with children in brick and mortar parks and sometimes during the experiences that followed. So the seed was planted around blending the things that hadn’t been done before. I spent a total of 15 years with Disney. Walt Disney coined the phrase the “architecture of reassurance.” Disney parks were designed to be a safe place for families to play. At Reimagine Well we try to create an ‘architecture of healing’, creating a safe and special place for patients and families to heal. So my 15 years at Disney informed what I did to create an emotionally engaging space for people to play. I realized the same tools could be used for patients and families to experience the patient journey.
3.You had a health scare of your own not that long ago. Can you share more about that?
Cancer has been a ribbon throughout my life, from losing one of my best friends as a child to pediatric cancer and losing my mom to cancer in my 20s. For me, as a competitive athlete I got to know my body really well, and in 2004 I began noticing that something subtle was off. I’d gained weight without changing my diet or exercise regimen, I hit an energy wall in the afternoons. On the anniversary of my mother’s death I remembered her saying ‘don’t pretend nothings wrong as that’s what I did.’ I spoke to my doctor, had an MRI of my neck, and it was clear that I had thyroid cancer. One in three American women and one in two men hear the words “you have cancer” during their lifetime, but in that moment the world becomes a rush of white noise. You see a physician across from you speaking a language you don’t understand. I call it the “terror moment.” When you’re in shock you don’t make the most rational decisions since you are operating out of fear. You’re staring your own mortality.
It wasn’t until I was undergoing radiation treatment when the healing environment aspect hit me. The walls in the hospital hadn’t been painted since 1980s and this was the most un-healing experience I could imagine. I came from a place where the architecture of reassurance is what we practiced. It didn’t even smell right! It hit me like a ton of bricks that the patient experience, even though I didn’t know that term yet, was something to be worked on.
4. What were the things that helped you get through the cancer diagnosis?
I told very few people about the diagnosis, and actually didn’t tell my kids until after the surgery, when the pathology results came back. I remember going online and seeing 70 million hits for my search — I was in overload!
But I spoke with a good friend of mine who was a cancer survivor who advised me to just focus on one thing at a time. Effectively, the patient journey has different phases, from diagnosis to treatment, then healing and well-being. So the biggest thing that helped was when I realized I only needed to focus on just one of those phases at a time, suddenly I could catch my breath again and look at phase relevant to me at that point was enormously helpful. This then informed our social platform for Reimagine Well, which helps patients set achievable health goals and use the wisdom of the healthcare community (which includes healthcare professionals) to navigate the patient journey..
5. What’s the most misunderstood aspect of cancer and dealing with a diagnosis/living with cancer?
There are a few things.
The first is that unless it’s critical, take the time to let yourself get the information you need. More often than not you have time before you need to jump into treatment. Take the time to find the right care team, do the research and get informed and get a second opinion.
The second myth is that all cancer treatments are the same: that’s not the case. A small community center may not include the clinical trials that may be available at a larger center. You owe it to yourself to do the research if your odds for survival are potentially better at a larger center.
The third is that clinical trials turn patients into guinea pigs. This is a big misunderstanding. Clinical trials often provide the best, most attentive, cutting edge clinical care someone can get, and if a clinician recommends a trial you qualify for, don’t be afraid to consider it.
The last is the role of diet and exercise. A healthy BMI can significantly reduce the chance of cancer recurrence and there are recommendations for 45-75minutes of exercise daily. Unfortunately very few doctors are trained in these lifestyle factors. Find a credentialed Registered Dietician to help you design the best program for you and your specific health goals and medical needs.
6. What does thriving mean to you?
Thriving in my new normal means having an emotional, spiritual, and physical health balance. Compared to 15 years ago, I can honestly say my work, family, and active lifestyle are so much better today than it was before my cancer diagnosis. I think it was because of my approach to the disease, my new career with Reimagine Well (which happens to be very rewarding) and adopting a healthy and active lifestyle. Thriving also involves having a supportive community, we hold each other accountable for our health goals as well as providing emotional support and friendship.
7.What are you most looking forward to with Reimagine Well and in general?
Right now I’m teaching a Healthcare by Design course at the California Institute of Arts. Last year we delivered a pilot project to Children’s Hospital Los Angeles and this year we will create a pilot program for the Henry Mayo Newhall Hospital in Valencia, so helping to educate and train the medical experience designers of tomorrow is super rewarding. At Reimagine Well we are launching a new experience design program, which involves reducing the need for excessive sedation in several pediatric medical centers, and using virtual reality as part of this program. With the proof of concept pilot program we were able to reduce the mean age of sedation from 10 to 3; a formal clinical study (with research ethics approval) is now underway with Nebraska Medicine on this. In 2020 we will also be expanding into pediatric behavioral programs, and adult oncology.
**Originally published on ThriveGlobal**
On the island of Okinawa, Japan, driving about 90 minutes up the coast from the capital Naha lands you in Ogimi. Known as the “longevity village,” it historically has the most centenarians per square mile compared to anywhere else on Earth.
One of the factors that may benefit their health most: consistent and regular social interaction, in the form of tight-knit community networks. I was invited to sit in on one of their formal monthly meetings, arranged by the Japan National Council of Social Welfare.
When I interviewed 90-year-old Fumi Teruya, she explained that every morning she sweeps the deck of her home. In doing that she exercises but also catches up with neighbors around the village who are out for their morning walk. Other friends regularly come over to cook lunch with her, and the evenings are often spent singing or chatting with neighbors, all of which she believes keeps her youthful and happy.
The research agrees: These relationships may boost longevity.
Back in the capital, renowned doctor and longevity researcher Makoto Suzuki, M.D., Ph.D., of the Okinawa Research Center for Longevity Science (ORCLS) has been studying centenarians in Okinawa since 1976. He has found that these networks form a sense of social cohesion that is an important part of why many Okinawans have enjoy a long, and often disease-free, life. These networks are known as moai.
“Moais involve ritualistic connections that are both reliable and close knit, which involve a common interest but not usually a common professional identity,” Suzuki said. “In my own moai, we have 10 members, and I’m the only doctor. A time is decided, a venue is decided, and the rules are decided as well.”
Suzuki’s ORCLS research partner since the last 1990s and co-author of The Okinawa Program Craig Wilcox, Ph.D., MHSc, FGSA, added, “A moai is more than just a friend group. It’s often village-based and consists of rituals and institutions that keep people connected.”
There’s a global problem with loneliness.
It’s no secret that loneliness is an epidemic, and a study published in June reviewed how our general health and wellness can be affected by our social networks, and during the holiday season, isolation is felt more deeply. Loneliness has been linked to heart disease, metabolic syndrome, diabetes, malnutrition, dementia, depression, and mortality. One theory behind this link is that chronic isolation disrupts a number of neuroendocrine factors that lead to higher stress response.
Over the last several years, I’ve personally encountered many patients with the disease of isolation, from discussions about end-of-life care with a patient who had become estranged from his family to a teenage girl who had overdosed and shared that the bullying about her weight had taken a toll. Upon further probing, it became clear that it wasn’t the bullying itself but that she had no one to lean on to help deal with it.
Some health systems are addressing the problem of loneliness. In the U.K., the NHS appointed a chief loneliness officer. Suzuki’s years of research suggest the answer to this epidemic might be intentionally creating our own purpose-centered social networks, in other words, moais.
In 2017, study out of Spain found that social networks, and higher frequency of social interaction, can reduce depression among older adults. Interventions aimed at improving social support among patients with cardiac disease appear promising, as are early reports from studies of seniors in Israel and in Sweden and Canadian men facing retirement. And among parents specifically, building social support systems can decrease postpartum depression and the isolation that comes with being a new parent.
What can be done to help combat loneliness?
However, these studies also face the issue of replicability, and causal associations are difficult to draw. For instance, earlier this month, a study led by Jason Chen, Ph.D., of the Center to Improve Veteran Involvement in Portland, was published in Social Psychiatry and Psychiatric Epidemiology. They found that, counterintuitively, among veterans, loneliness was associated with lower depression severity. This has prompted study authors to more closely examine the role of social support interventions.
“We are currently looking at interventions that are not only relevant to veterans just at our hospital but also in other settings,” Chen said. “In addition, our study team is interested in emphasizing the potential for loneliness interventions for our more rural, isolated populations in Oregon and beyond.”
Reza Ghomi, M.D., is a Seattle-based neuropsychiatrist who sees firsthand how social support alone can have a dramatic impact on emotional well-being.
“Social isolation has dramatic effects not only on mental health such as increasing risks for depression and anxiety, but now we are seeing it can increase risk for cognitive impairment and ultimately dementia,” Ghomi said. “Building community does the reverse and promotes a sense of well-being and satisfaction including improvement in cognitive abilities.”
When it comes to the medical community, at a time when burnout was just named as one of the biggest challenges in health care by a Lancet report, finding supporting environments remains key among health care providers. Dana Correil, M.D., an internist and co-founder of SoMeDocs (“social media doctors”), points to the benefits of her “moai” being centered around a shared interest in advocacy and health care communication.
“For doctors, social media can be a space for connection, a powerful tool to mitigate the loneliness epidemic,” Correil said. “It allows us to exchange ideas, find camaraderie and perspective for issues challenging our profession today and provides us with opportunities to make actual change.”
And the opportunity for doctors to connect offline have flourished: everything from storytelling workshops like the Nocturnists, narrative medicine programs to Schwartz rounds help build community around shared vulnerability.
They say it takes a village to raise a child. But, as the science suggests, the health and well-being of all of us may benefit from having our own village, or moai: at home, work, and everywhere in between.
**Originally published on Mindbodygreen.com**
Even short hospital ICU stays can cause lasting problems for patients. Can early mobility and exercise help?
SAPNA KUDCHADKAR still remembers the morning in 2010 that shaped the trajectory of her scientific research. She was in the midst of a medical fellowship, listening carefully to the hospital’s overnight staff, as they summarized the progress of each child in the pediatric intensive care unit. The staff would comment on how well the patients had slept the night before. “In that moment, I realized that we weren’t really talking about sleep, per se, but really sedation,” says Kudchadkar.
While the terms are sometimes used interchangeably in intensive care, she says, they are not the same. Among other things, real sleep is restorative; upon waking, patients feel energized. The disruptive effects of sedation, Kudchadkar suspected, could have lasting implications for a person’s recovery and long-term health.
Knowing that physical activity enhances sleep, Kudchadkar wondered: Would her young patients do better if they were encouraged to move during their stay in intensive care? At the time, this question was already being investigated in adults, but had largely been avoided in pediatrics due to concerns about patient safety. The intensive care unit (ICU), after all, is widely viewed as a place of rest for the acutely ill or for those recovering from major surgery. And some ICU patients rely on breathing tubes, which are cumbersome and often require sedation to prevent the body from reflexively trying to remove the tubing. Getting exercise broadly into the ICU, then, would require research demonstrating that it is both effective and safe.
Two multi-year initiatives — one directed by Kudchadkar at Johns Hopkins School of Medicine, and one based at McMaster University in Canada — are now providing that kind of evidence for patients of all ages. These initiatives are part of a broader trend toward “ICU liberation.” While intensive care has improved dramatically over the decades, resulting in higher survival rates, there is now a broad recognition that survivors are not walking away unscarred. The ICU liberation movement seeks to reduce the negative effects of intensive care, which can linger for decades, and include everything from lowered muscle strength to depression and anxiety. One way to do this is to decrease sedation and encourage patients to move far sooner than they have in the past.
As with any major culture change, though, “there was some pushback early in the process,” Kudchadkar wrote in an email. Some of her colleagues worried that the new initiative might push sick patients to perform beyond their physical abilities. So she and her team worked to reassure colleagues that patients’ goals would be individualized. “There was a collective sigh of relief that we weren’t trying to get every kid out of bed walking regardless of their acuity of illness,” Kudchadkar recalls. Still, she adds, “illness doesn’t mean stillness,” the program’s catchphrase. That view, according to Kudchadkar, is now shared by a growing number of intensive care specialists across the country.
SEDATION STANDARDS for intensive care units can be traced back to the 1980s, when operating room procedures began being applied in other settings. Sedation causes the brain to take on a semi-conscious or unconscious state, and the drugs include propofol and benzodiazepines. Additional drugs called paralytics are often added to prevent the body from moving. At that time, the focus was largely on using sedation to keep a patient comfortable and able to tolerate pain, without as much regard for the negative long-term effects of prolonged sedation, says Yahya Shehabi, a professor and director of critical care research at Monash University School of Clinical Sciences in Australia.
A pivotal change came in 2000, with a New England Journal of Medicine article that discussed the benefits of interrupting sedation for a brief period each day. Over time, additional research would show that sedation has its own side effects. For one, it has been linked to cognitive issues, typically memory deficits. Additionally, bed rest can lead to muscle deconditioning. A 2014 study found, for example, that each day of ICU bed rest lowered a person’s muscle strength between 3 and 11 percent. Over one third of ICU patients were discharged from the hospital with muscle weakness, and that weakness was associated with substantial impairments in physical function lasting months, and in some cases years.
New research also points to the benefits of physical activity for people dealing with an array of conditions. In August, a systematic review and meta-analysis found that adding physical exercise to standard care may improve quality of life in everything from multiple sclerosis to Parkinson’s disease. When it comes to children, a study in the Journal of the American Medical Association showed that children and adolescents with a concussion may benefit from light activity earlier than traditionally advised. And in June of last year, a systematic review of 15 studies reported that exercise can improve attention and social behavior in children with attention deficit hyperactivity disorder, or ADHD.
Still, Shehabi issues a word of caution regarding the introduction of physical activity into critical care: “Patients who are able to mobilize usually self-select as they get better to achieve ICU liberalization,” he wrote in an email. “As such, many patients will not be able to mobilize before they have recovered substantially from critical illness.” Lakshman Swamy, a pulmonary and critical care fellow at Boston Medical Center, echoes this point: “Early mobilization is critical but difficult — and potentially dangerous without the proper systems and support.” Sick patients may be connected to medical tubes, lines, and drains, all of which can be displaced and serve as major fall risks, says Swamy. “Even one fall can be catastrophic.”
KUDCHADKAR’S INITIAL one-year study, which ended in 2015, was designed to assess the safety of a program that encourages young ICU patients to walk and play. Sydney Pearce was two-and-a-half years old and recovering from open-heart surgery when her parents agreed to let her participate. Within 24 hours of the operation, she was up and walking and driving a cozy coupe car around the ICU. “We had no idea about what the program could do,” said her mother, Ashley. While Sydney was initially reluctant to move about, the young girl soon became determined to try everything she had enjoyed before.
That study, published in 2016 in the journal Pediatric Critical Care Medicine, indicated that the mobility program was safe and appropriate for follow-up testing. As a next step, Kudchadkar is helping lead a multicenter randomized controlled trial to look at the protocol’s effectiveness. It will measure outcomes such as duration of mechanical ventilation, exposure to sedative medications, and length of stay. Johns Hopkins All Children’s Hospital in Florida, Boston Children’s Hospital, Advocate Health Care in Illinois, and Our Lady of the Lake Children’s Hospital in Louisiana are participating in the trial.
Researchers at McMaster University in Canada are also studying ICU mobility. In particular, they are examining whether “in-bed cycling” can help improve outcomes among adult ICU patients. The results of a pilot randomized controlled trial involving seven ICUs, led by Michelle Kho, a physical therapist and professor, were published last year. A larger trial involving 17 ICUs across Canada, the U.S., and Australia, now aims to compare whether adding early in-bed cycling to routine physical therapy among adults in the ICU improves physical function, mental well-being, and mortality, among other factors.
As part of the McMaster-led study, bike pedals mounted on a platform, are wheeled into the patient’s room. A physical therapist then guides the patient — who remains in bed — to use cycling as a strength and rehabilitation program. If patients are physically able, they can pedal the bike unassisted. For patients who are too sedated or weak, the motorized bike passively moves the patient’s legs. Each session typically lasts 30 minutes. “In a lot of ICUs people are on bedrest, which can lead to muscle weakness and general deconditioning,” says Kho. But thanks to the in-bed cycle’s motor, even patients who are sedated and receiving life support can participate.
Physical therapist Kristy Obrovac, who is based at a McMaster-affiliated hospital, St. Joseph’s Health Care, recalls one adult patient who used the in-bed cycle after complex thoracic surgery. The experience provided “an opportunity to focus on something positive,” she says, while offering “a sense of control in the recovery during a very challenging time.”
The in-bed cycling sessions are conducted by physical therapists and engaging them at other hospitals will be key to ensuring that the program can be replicated in different settings, says Kho. “We aren’t looking at the effect of exercise per se, but more at breaking up sedentary behaviors, and the impact that could have for ICU patients, which includes the opportunity to regain some control and hope,” says Kho.
While these new efforts are promising, it may be a few years before the field of intensive care medicine adapts to more formally include them. One challenge could be purely logistical. During the day, ICU patients undergo a range of tests, procedures, and imaging studies, plus they often have visitors. So it could be hard to find a time when clinicians and patients are ready to work on mobility, says Swamy.
Still, he views research like Kudchadkar’s and Kho’s as part of a necessary and important shift in ICU care more generally: “The way we practice medicine needs to be radically reimagined to put the patient — and patient mobility — at the center of the care plan.”
**Originally published in Undark magazine**
The secret to sticking with your resolutions may be having a coach to help strategize and cheer you on.
My teenage patient looked nervous as I reviewed her glucose readings from her glucometer and her glucose logbook, which people with diabetes use to track their blood-sugar test results. There were a lot of high levels — ranges in the 12’s and 14’s, when the goal was around 7 or 8. The peaks were mostly in the middle of the day and on weekends. (This was in Canada; blood glucose readings of 12 to 14 are equivalent to 216 to 250 mg/dL in the United States.)
“What do you usually eat at home?” I asked. She said that her mother was careful to make her a breakfast that balanced carbohydrates with protein. Her dinners were similar.
“What do you usually eat at lunch?” I asked. My patient started tearing up. She ate whatever her friends were eating in her high school’s cafeteria that day — like spaghetti, hamburgers or pizza, and something like a cupcake for dessert. This was probably what led to her readings being so high.
She had met with diabetes educators before, and she knew what uncontrolled glucose does to a person with diabetes, from speeding up nerve damage in the feet to hastening blood vessel damage in the back of the eyes and the kidneys, to increasing her risk of heart disease.
I knew she could have told me all of that, so lecturing her wasn’t going to help.
Instead my patient needed empathy and the tools to help her make healthier decisions, and part of that required understanding what was important to her, specifically “fitting in” with her friends in high school, the ones who didn’t have a chronic disease. It also would have involved helping her find the motivation within herself to make the change.
But my skill set for helping her was limited, especially on top of everything else I had to cover within our allotted time of 45 minutes.
Research suggests that behavioral and lifestyle factors are a big part of what contributes to chronic disease. In medical training, we learn a lot about the body and how to prevent and treat disease, but little about how we can motivate a patient to change old habits or even stick with a current management plan.
It struck me that what my patient really needed was a coach. At this time of year when many of us have made resolutions to get healthier, working with a health coach might be one way to reach those goals.
A health coach is someone trained in behavior change, who primarily uses an interview style called “motivational interviewing” to help patients see their ability to make change. While some may have clinical training in fields like nursing or medicine, they hail from a wide variety of disciplines or train in health coaching as a secondary career.
As a relatively young field, it’s still finding its footing — for instance, a systematic review found that the definitions of “health coaching” varied widely, though the authors recommended that health coaches take a patient-centered approach to help with goal setting while encouraging self-discovery and accountability.
The evidence that health coaching may spur general lifestyle changes is mounting. A 2018 study looked at clinical trials for coaching for nutrition and weight management and found that over 80 percent of these studies found improvement. And a 2017 study found that coaching can lead to increased physical activity in older adults. Studies suggest that health coaching may also provide benefits for conditions such as obesity and diabetes as well as attention deficit hyperactivity disorder, chronic pain, hypertension and high cholesterol. A recent review found that health coaching can improve quality of life and reduce hospital admissions among patients with chronic obstructive pulmonary disease, and it may help patients to become more engaged in the health care system.
It may even improve health outcomes through encouraging patient adherence to medication.
“Health coaching recognizes that we cannot help people by expecting them to act if that person is not ready to act,” said Leila Finn, a health coach based in Atlanta. “We help people take big goals and break them down into accessible, bite-size pieces — not by telling clients what to do but by helping clients figure out what will work for them.”
Health coaching gets to the heart of what providing good health care is about: acceptance, partnership, compassion, and helping patients feel respected and understood.
Though my clinical training is in pediatric medicine, inspired by what I had read, I recently completed a certificate in health coaching myself. The experience was eye-opening and humbling. I learned new ways of communicating with my patients, specifically ways to encourage them to see their own ability to make lifestyle changes while setting manageable goals. I also learned ways to cheer them on when they reach their goals, without shaming them if they relapse: Both pieces are critical to the process of making sustainable change.
While research is beginning to show the value of health coaching, the principles of communicating with the intent to inspire and motivate are transferable to all health professions — and could reap dividends if taught early on in the training of nursing students, medical students, pharmacy students, and other allied health professionals.
And when I think back to my teenage patient with diabetes, while I was empathetic, that was only half of the solution. The second half could have involved coaching her to see which small changes she could begin to make moving forward. I’m hoping that choosing my words more effectively, even within the pressures of time, may make all the difference for my other patients.
**Originally published in the New York Times**
Kashiwa Hang (real name: Iwao Mano) is a 38-year old handpan musician based in Tokyo. In 2016 he experienced what many of us in North America call “burnout,” except it’s arguably more difficult in Japan, where many companies expect their workers to work over 16-hour days. This is one major contributor to what’s known as ‘karoshi’ ((過労死) or ‘death due to overwork.’ Often on the Japanese subway/train I would notice men and women in suits, often late at night, sleeping on the train, clearly only just heading home after work. In my hotel I once saw someone in a suit, with a briefcase, sleeping in the lounge, possibly too tired to even check in after a late night at the office. A Japanese friend explained to me that it’s common for some workers to find a capsule hotel (inexpensive hostel-like accommodation) to sleep after a late night, and go back into the office the next day, and the sad thing is that very few talk about the burden of this ‘overwork culture’ openly, despite efforts by the Japanese government to institute workplace policies to combat it. Recently the Atlantic covered why it remains so challenging for young people in particular to speak out about depression in the workplace.
While in Japan as an Asia Pacific Media Fellow reporting on artificial intelligence and healthcare, I happened upon Kashiwa Hang performing on the sidewalk. I snapped a quick photo of his CD and promptly downloaded his album. A quick web search later on, in an effort to find more of his soothing music, led me to learn that his story was a truly remarkable one. We were able to find time to speak at a café in Tokyo, about what led him to leave a demanding but lucrative architecture position to become a musician full time. It turns out it was a decision he made for his well-being, and is hopeful that other young people in Japan may have the courage to place their health first as well.
1.Thank you so much for finding the time to share your journey. Why don’t we start at the beginning. What led you to your initial job in architecture?
Growing up I was always interested in computers, math and design. Architecture seemed like a natural fit, and I enjoyed my classes in architecture. I ended up working for a few different architecture firms – from large ones to smaller boutique firms. I enjoyed the variety.
2.While you were working at one firm in 2016, you experienced something challenging but transformative. Can you share this with our readers?
I had been working at a medium-sized architecture firm in Tokyo and, as one of the youngest architects there, was given a larger proportion of the tasks. The mentality here in Japan is “if you’re young and healthy, you can handle more work.” And I did handle it for a period of time, all in all about 10 years. But I was getting into the office by 7 or 8 am and staying well past midnight with not much time for breaks. I skipped lunch often. I was on my feet a lot, and always looking at a computer screen. It was cognitively demanding work as well, so over time my body and mind just became exhausted. I began feeling anxious, and would notice heart palpitations often. One day, while at a standing desk, working through a design, I just collapsed. I don’t remember all the details, but I was taken to a local hospital and the doctor told me I needed more rest. I didn’t have a diagnosis per se, but when I explained it to my boss, he didn’t understand. I had no choice but to go back to work the next day, and act as though nothing had happened. And so, not knowing what other options I had, I just did it. A few weeks later I was walking home from the train and saw a man playing the guitar on the street. The sound was so calming, so I stopped to listen for awhile. For the first time in a long time my heart felt happy, and I felt calm. In that moment I thought: why don’t I learn an instrument?
3. Do you think you were on your way to ‘karoshi?’
In a short answer: yes. There’s no doubt that would have happened had I not made a change.
4.Let’s talk about that change. Clearly you took that hospital visit seriously – you ended up picking a different instrument and leaving the industry of architecture all together. That sort of 180-degree shift career-wise, is not common in Japan is it?
That’s right. First I thought back to an instrument I really loved in high school – on a trip to Barcelona I had first heard about the handpan. The sound was beautiful, and I had learned that it was a relatively new instrument, having been invented around the year 2000 in Switzerland. But I couldn’t remember the name of the instrument! I ended up searching things like “UFO music pan” and finally found it, and the name, “handpan.” Then I searched online for classes, but couldn’t find any, and I couldn’t even buy one in Japan! So I found a company in Switzerland and ordered one directly. Then I began to teach myself through YouTube. Overtime, with practice, I travelled to France and learned directly from local artists there. My English improved as well, and I ended up finding a community to tour with. I recently completed a tour in Taiwan, and plan to go to Europe soon. In terms of your second observation, you’re right: freelancing of any kind isn’t common in Japan. There is real fear around financial stability and most people would rather have a steady job, even if they are overworked, compared to the uncertainty. At first my parents were very concerned, but now I perform (and get paid), and teach students, so I’m able to support myself.
5.That took a lot of courage. So what about architecture? Will you go back?
A lot of my friends say I’m brave. I just think I had not choice if I wanted to keep living and if I wanted to have a happy life. I don’t have plans to go back to architecture now. I enjoyed it, but the costs to my health, at least in Japan, were too large. I’m much happier as a musician. I’m more in control of my health, I sleep well, and overall feel calmer and more at peace.
6.What does thriving mean to you?
If you asked me that question in early 2016, I would have described the sense of feeling ‘rich’ financially, working hard, making lots of money, etc. Now I see it as richness of the heart and mind, along with having good friendships.
7.What are you most looking forward to with your music now?
I’m working on another album, and am teaching more. I hope to do another tour soon as well, and there are lots of opportunities to perform around Japan as well. But reminding myself that right now I’m living the dream. Thinking back to a few years ago, right now I’m so grateful to really be thriving.
Earlier this month, in a private imaging clinic in the Ginza district of downtown Tokyo, I lay patiently as the MRI machine buzzed and rattled. I wasn’t there at the request of a doctor, but to screen my brain using a machine learning tool called EIRL, which is named after the Nordic goddess Eir. It’s the latest technology, focused on detecting brain aneurysms, from Tokyo-based LPixel, one of Japan’s largest companies working on artificial intelligence for healthcare. Brain aneurysms occur when a blood vessel swells up like a balloon. If it bursts, it can be deadly.
After the MRI, the images get uploaded onto a secure cloud, and EIRL begins its analysis looking for abnormalities. Each scan is then checked by a radiologist followed by a neurosurgeon. The final report, with the images, is produced within 10 days and accessible through a secure portal.
While LPixel offers a number of other A.I. tools to assist with CAT scans, X-rays, real-time colonoscopy images, and research image analysis, the EIRL for brain aneurysm detection remains their most advanced offering. The EIRL algorithm was built upon data extracted from over 1,000 images with confirmed brain aneurysms, in partnership with four Japanese universities, including the University of Tokyo and Osaka City University. Data from a 2019 study by LPixel and their partner universities found EIRL for brain aneurysms had a high sensitivity of between 91 and 93% (sensitivity refers to the likelihood of detecting an aneurysm if one is indeed present).
Mariko Takahashi, project manager with LPixel, explains that EIRL differs from computer-assisted devices in that there is a learning component: “EIRL becomes more accurate the more it’s used,” she says. According to Takahashi, EIRL has detected cases of aneurysms that require immediate medical attention, even though the patients displayed no symptoms.
The EIRL for brain aneurysms algorithm was approved by the Japanese Pharmaceutical and Medical Devices Agency (PMDA) in the category of software as a medical device in Japan in September. The algorithm is based entirely on Japanese patients, but it could be generalized to other populations, says Takahashi, though she notes that their group is looking into studies showing that the Japanese anatomy of brain vessels may vary slightly from other ethnic groups and whether the algorithm would therefore need to be validated in other populations.
EIRL does have competitors. A Korean startup called Deepnoid is developing a brain aneurysm detection tool using MRI. Also, GE Healthcare is using brain CT to detect aneurysms. Lastly, Stanford is positioning itself to use deep learning in brain CTs to detect brain aneurysms, though it appears to be intended for diagnosis, not screening. Competitors in Belgium and China as well are using AI to detect brain tumors.
LPixel hopes to have FDA approval for EIRL in the U.S. in 2020 and is working to ensure it meets HIPPA compliance regulations and privacy and security.
But just because you might soon be able to get AI-assisted screening for your brain, should you?
It’s a complicated and very personal question. In the U.S. and Canada, there is a push to reduce unnecessary testing, which includes limiting screening tests to those that are inexpensive and have been shown to reduce the likelihood of disease, such as breast cancer and colon cancer. Currently in the U.S., Canada, and U.K., there is no recommended population-wide screening program for brain aneurysms, and the American College of Radiology recommends that head and neck MRIs be limited to situations where there are symptoms suggesting a pathology such as a tumor, or for cases where there may be brain metastasis of another cancer (such as breast cancer).
There are dangers to overscreening, particularly when it comes to the brain: for one, the possibility of unnecessary and invasive testing. In essence: when you go hunting for abnormalities in the brain, you might find things you didn’t expect to uncover—for example, an “incidentaloma,” which is a lesion that isn’t necessarily harmful or may just be a normal variation in human anatomy. These can occur in up to one-third of healthy patients. The harm involved in investigating these, such as the risk of infection when obtaining a sample, can outweigh the benefits.
However, those who are at high risk of aneurysms, such as those with a family history, may warrant screening. Notably, in Japan, brain aneurysms are more common compared to other populations, an issue that may also be muddied by the fact that more people choose to be screened for it. They may also be more likely to rupture. And MRI screening in Japan is less expensive: roughly $200-$300 for a head MRI, which is around 50-75% less than in North America.
Dr. Eric Topol, physician and author of the book Deep Medicine: Artificial Intelligence in Healthcare, shares these sentiments. “There’s no question AI will help accuracy of brain image interpretation (meaning the fusion of machine and neuroradiologist, complementary expertise) but there are drawbacks such as the lack of prospective studies in the real clinical world environment; potential for algorithmic malware and glitches, and many more, which I reviewed in the ‘Deep Liabilities’ chapter of my book,” Topol says. “Personally I do not see the benefit to using AI technology for ‘screening’ of brain aneurysms at this time, as there’s no data or evidence to support the benefit, at least in patients without relevant symptoms.”
That said, if the algorithm is validated for populations outside Japan, there could be potential in diagnostic situations, for instance in hospitals as opposed to private clinics, as well as for high-risk individuals who need screening. And that’s where the company seems to be headed.
“Right now we’re exploring how to best roll out technology in hospitals in Japan, in collaboration with our partners,” Takahashi says.
As for me, I received my results about 9 days later, and—assuming the translation from Japanese to English was accurate—according to EIRL, there were no abnormalities.
**Originally published in Fast Company**
Active charcoal comes in many forms: toothpaste; powders, black-colored ice-cream, or “goth lattes.” On Instagram, it is used as a prop. Medically, activated charcoal is used in emergency hospital settings, typically to absorb drugs after an overdose.
What is activated charcoal said to do?
Proponents contend that activated charcoal is a natural detoxifier of the body that can, for example, remove teeth stains and even work as an anti-aging product. After all, if it can medically detoxify the body of poisons, a smaller dose probably works too, right?
Not necessarily. Just to clarify so no one goes sprinkling charcoal in their latte: Activated charcoal is charcoal that has undergone a process in which gases like oxygen are added at high temperatures, resulting in pores that provide a high surface area that allows it to bind to other substances.
Does activated charcoal do anything?
A review in the British Journal of Clinical Pharmacology in 2015 reported that activated charcoal has pores that soak up fluid. It is often derived from burned organic substances, such as coconut shells (as in coconut ash). Dr. Mark Su, a medical toxicologist and director of the New York City Poison Control Center, said that activated charcoal worked by binding to drugs to prevent absorption in the body.
There are side effects in the emergency department setting, like vomiting or pulmonary aspiration. Activated charcoal also doesn’t work on certain alcohols. Some hospitals prefer not to use it in the emergency department and instead opt for more specific antidotes to poisonings and overdoses.
For the rest of us, our liver and our kidneys do a great job of detoxifying things on a day-to-day basis.
If optimal health is the goal, eating healthfully — plenty of green, leafy vegetables — sleeping at least seven to eight hours a day, exercising at least three times a week at an intensity where you sweat (sweat is detoxifying), reducing stress through mindfulness, journaling, and cultivating community and a strong support network are helpful habits to introduce.
Can activated charcoal harm you?
It’s possible that activated charcoal may reduce the effectiveness of certain medications like those for high blood pressure or seizures.
In New York, Morgenstern’s Finest Ice Cream, made with coconut ash, was wildly popular, but in 2018 the company was served “commissioner’s orders” from the New York City Department of Health and Mental Hygiene to stop serving it. The company complied, and the Department of Health and Mental Hygiene has continued to crack down on coconut ash, though Michael Lanza, the assistant press secretary for the department, said in an emailed statement, “Restaurants may serve foods with activated charcoal after securing approval from the F.D.A.” (Stores like Pressed Juicery still sell activated charcoal lemonade in stores outside New York, though not online, citing the ban.)
In the 1960s, the Food and Drug Administration prohibited the use of activated charcoal in food additives or coloring, but an F.D.A. spokeswoman said in an email that the ban was precautionary, as there was a lack of safety data.
What about activated charcoal in health and beauty?
The questions about the use of activated charcoal in foods have not stopped the trend of activated charcoal moving into health and beauty. A study from January 2019, which involved staining cow, goat and sheep teeth with concentrated black tea, found that activated charcoal in toothpaste was not as effective as other whitening agents like hydrogen peroxide or microbeads.
A previous review from 2017 of 118 studies found that there was not enough evidence to support the safety or efficacy of charcoal-based toothpastes and powders and that their safety hadn’t been demonstrated. On balance, given the alternatives, and the risks of ingestion, it is better to stick with safer toothpaste substances, the review suggests.
On the other hand, Dr. Su said there was no clear concern at this time about charcoal’s safety for beauty products for external use.
**Originally published in the New York Times Styles Section**
“So, if we’re worried about viral myocarditis, would the patient have similar symptoms as someone with pericarditis?” The astute medical student slipped me his question as we hurriedly made our way across the ward to the next patient’s room.
He had wondered whether inflammation of the heart muscle (as in myocarditis) presents like inflammation of the protective layer around the heart (the pericardium). Classically we are taught that pericarditis-type chest pain is better when sitting up (because the protective layer is kept away from the nerves that transmit pain) compared with lying down or when taking deep breaths.
“Well there is some overlap in clinical signs,” I began. But we were already on to the next patient, and so my attention was redirected. The student had looked eager to hear my response, but that expression quickly slipped away.
These missed opportunities, to explore and address complex questions, are frequent in medical education, and the downstream consequences of not fostering this curiosity are significant.
Curiosity is the necessary fuel to rethink one’s own biases, and it can reap dividends for patient care. When doctors think about a set of symptoms separately, they may reach different conclusions; for example one study found that up to 21% of second opinions differ from the original diagnosis.
Allowing doctors to express their curiosity is crucial and it’s time we encourage all medical trainees to be curious.
The decline in curiosity could be caused, in part, by medical trainees assuming a traditionally passive role in hierarchically organized settings like hospitals, suggests a 2011 paper, coauthored by Ronald Epstein, MD, a professor of family medicine, psychiatry, oncology and medicine at the University of Rochester Medical Center.
“There’s a dynamic tension here. People pursue medicine because they are curious about the human experience and scientific discovery, but early in training they are taught to place things in categories and to pursue certainty,” Epstein told me.
A 2017 McGill University study led by pediatrician Robert Sternzus, MD, took this theme a step further. Sternzus and colleagues surveyed medical students across all four years about two types of curiosity: trait curiosity, which is an inherent tendency to be curious; and state curiosity, defined as the environment in which the trait curiosity can survive. Trait curiosity across all four years was significantly higher than state curiosity. The authors concluded that the medical students’ natural curiosity may not have been supported in their learning environment.
“I had always felt that curiosity was strongly linked to performance in the students I worked with,” Sternzus says. “I also felt, as a learner, that I was at my best when I was most curious. And I certainly could remember periods in my training where that curiosity was suppressed. In our study the trends that we found with regards to curiosity across the years confirmed what I had hypothesized.” Sternzus has since spearheaded a faculty development workshop on promoting curiosity in medical trainees.
So what might be the solution, especially as the move towards competency-based training programs may not reward curiosity, and at a time where companies in places like Silicon Valley — which invest in curious and talented minds — position themselves to be another gatekeeper of health care?
New work led by Jatin Vyas, MD, PhD, an infectious disease physician and researcher who directs the internal medicine residence at Massachusetts General Hospital, offers one idea. His team developed a two-week elective program, called Pathways, which allows an intern to investigate a case where the diagnosis is unknown or the science isn’t quite clear. They then present their findings to a group of up to 80 experienced physicians and trainees.
“What I have found is that many interns and residents have lots of important questions. If our attendings are not in tune with that — and it’s often due to a lack of time or expertise — the residents’ questions are oftentimes never discussed,” Vyas says. “When I was a resident, my mentors helped me articulate these important questions, and I believe this new generation of trainees deserve the same type of stimulation and the Pathways elective is one way to help address this.”
At the end of June, Pathways reached the end of its second year, and Vyas recounts that resident satisfaction, clinical-teacher satisfaction, and patient satisfaction were all high. “Patients have expressed gratitude for having trainees eager to take a fresh look at their case, even though they may not receive a breakthrough answer,” Vyas says.
The job of more experienced clinicians is to nurture curiosity of learners not just for the value it provides for the students, but for the benefits it poses for patients, Faith Fitzgerald, MD, an internist at the University of California Davis, has written. Physicians of the future, and the patients they care for, deserve this.
**Originally published in the Stanford Medicine Scope Blog**
Dr. Neel Desai is a primary care physician based in Fort Mitchell, Kentucky. He is a contributing member to The Happy Doc podcast. He wrote a book called The O.I. Connection about the rare condition osteogenesis imperfecta, a rare genetic condition of faulty collagen and bone synthesis [summary of condition]. Dr. Desai spoke with me in September from Fort Mitchell, Kentucky.
We connected because I was working on a ‘medical mystery’ article about O.I., and had, by chance, come across the Happy Doc podcast, which I loved. But you had an interesting journey in medicine that prompted you to co-develop the podcast. Share a bit of that with readers.
I’ve been working as a primary care doctor for 15 years, and about 5 years ago, it got to a point where I was becoming frustrated with medicine. I was losing autonomy to administrative burden and inefficient electronic medical records. So I wanted to look for ways to build (digital) creativity into my life and regain some autonomy. Writing my book and being part of the podcast led me to some powerful insights. I realized creative pursuits helped me address frustrations with the current medical system. I also observed another common pattern: the rigorous process of becoming a physician can suck the creativity out of doctors in training. Conversely, we observed doctors, residents, and medical students working on a creative endeavor regained energy and fulfillment in their training, as well as in their personal and professional lives.
1.What is the HappyDoc Podcast?
The Happy Doc Podcast was started by Dr. Taylor Brana, as a third-year medical student, at a time when he was becoming disillusioned with his medical training, and as a result was just very unhappy. He began asking the question, ‘are there any happy doctors out there?’. Most of what he was seeing in his attendings was not good: burnout, lack of joy in medicine, and just disillusionment with their current station in life. He connected with me online, seeing that I had been out in practice, and asked me if I was happy. I had a unique answer to that question (I was happy when it came to initiatives aimed at educating the public about OI through modern technology ). He asked me if I wanted to join his podcast. The aim was to find happy physicians, discovering what helped keep them fulfilled in their work, and give listeners practical tips to do so in their own lives. I agreed to partner with Taylor and became the guest recruiter for the podcasts, and I also run social media engagement.
2.Let’s talk about what happened in Fall 2008 which led to your interest in O.I.
My wife and I were trying to conceive our first child and she had two miscarriages prior to this third pregnancy. This third one, a son, had made it to 17 weeks. During the ultrasound, the normally chatty ultrasound tech looked at the left femur (thigh bone) and fell dead silent. She abruptly left the room. She came back with the Ob/Gyn on call. He pointed out our son’s left femur was curved and not growing. He recommended we see a maternal-fetal specialist to set up an amniocentesis. We saw the specialist the next day. I’ll never forget how she delivered her diagnosis and prognosis: she said the findings were consistent with a skeletal dysplasia incompatible with life. She shrugged her shoulders, and said “I’m just being honest.” And left us in the room overwhelmed, heartbroken, shocked, and devastated. lt’s a great teaching point for any medical professional. Don’t ever deliver news that a person’s loved one is going to die without some compassion. That life changing moment prompted me to write an ebook called “The O.I. Connection,”. I found writing was very cathartic for me, helped to process my emotional trauma, and accept my son’s diagnosis. It also inspired me to help others in similar circumstances by bringing together resources for other OI families and caregivers in a practical and interactive way.
3.What can you share about getting to your ‘new normal’ after that diagnosis
My wife and I were obviously stunned with the diagnosis. But we wanted to educate ourselves as much as possible about OI. We found an online OI family community of support on Yahoo health groups. The group included several health professionals, physiotherapists, and an emergency room doctor. They had children with OI and first hand experiences dealing OI. They gave us hope as they had successfully navigated the road ahead of us. They told us about revolutionary treatments for O.I., specifically, medications like intravenous bisphosphonates to prevent fractures and reduce pain, as well as telescoping rods which expand like curtain rods to straighten out the bones. They educated us on how these interventions help children gain more strength to grow, improve function, activity, and have a happier and healthier quality of life. Ethan was born with at least 7 fractures (unknown if he had more). He required the rods, the medication, physiotherapy, occupational therapy, and started these early after birth. By 18 months he took his first steps with a walker. By 2 years old, he was running independently. It’s interesting, because as difficult as all this was, and still can be, at 10 years old today he can walk, swim, run, jump, dive, and dance. He still has to use his walker or wheelchair occasionally for safety or longer distances. He also academically functions at a higher level. He’s really into computers and space, for instance. I think even if there are physical limitations, many of these kids often adapt with their minds.
4.What is the biggest misconception about being a parent with a child with a chronic condition. Has it changed how you see your own patients?
The last thing any child with a chronic condition like O.I. wants is pity. What they want is compassion, understanding, kindness, dignity, and respect. A lot of people also assume that the subject is off limits for discussion, but we as an OI family embrace curiosity and asking questions, which is how all of us do better. I want people to ask questions and not be afraid to ask questions. I think keeping it taboo causes more problems. Asking questions leads to more understanding and acceptance. This goes for children with OI and answering their questions about OI as well. In regards to answering a child’s question about feeing less than or bad about why they have a chronic medical condition, I use the example of a parent I know explaining O.I. to her daughter with OI. She likens it to having blond hair or brown eyes or a birthmark: it’s just something you have, and nothing to be ashamed of. OI or any chronic illness can be hard as it affects how a family functions, but it can also affect marriages, jobs (especially with needing to take time off for fractures, surgeries, doctor, therapist, hospital visits), and can be very isolating and lonely for all involved. So one of the core lessons for me personally and professionally is the power of having a very strong supportive community to communicate with.
5.Switching gears how has this experience helped you approach your work as a doctor interested in advancing change.
All of this has really made me value strong communities. The role of community, as in having strong support networks and teams, is really important, and The Happy Doc community has been a huge part of that for me personally. A more proactive, as opposed to reactive, approach is really powerful as well.
In regards to advancing change, I think it’s time for us all to evolve in medicine. From what I’ve seen, it’s like medicine is dated and still stuck in the 20th century: there’s so much resistance to being innovative — poor EMRs, rigid traditional hierarchies, and using technology from the 20th Century (pagers, fax machines, etc) are barriers to where we could and should go. It’s 2019, and it’s time to practice medicine in the century we live in. We should embrace being proactive, innovative, and collaborative. We do this by amplifying what we value most: meaningful human connections. This occurs by reconnecting with our colleagues, our communities, and most importantly, with ourselves.
I use an analogy of it being like the medical profession was in the desert for most of the 20th Century, but now we’re in the 21st Century rainforest. The world expects us to just adapt to all the rapid changes over the last 20 years and thrive. But we can’t do this if there is immense inertia and if we don’t value questioning, curiosity, and creativity. Having outside interests – like podcasts or journalism—and integrating those creative outlets is important to develop current and future systems for the 21st century.
6.What does thriving mean to you?
Thriving means living your best life on your terms. Playing and loving your game unapologetically, unconditionally, and on your terms. Loving what you do, doing what you love. Waking up so energized that you can’t imagine doing anything else. And paying it forward and sharing your good fortune with the ones you care about most through the ups, the downs, and all the in betweens.
7.What are you most looking forward to now in general?
Creating a healthier, happier, wealthier, and wiser medical education system. A system where as healthcare professionals and patients, we are energized, enlightened, connected, and inspired. And most of all, to just enjoy the serendipity of the journey to the unknown and connecting to amazing people all over the world.
In 1853, as public health awareness was growing in England, Parliament passed a law requiring all babies to be vaccinated for smallpox, a virulent and deadly disease. The vaccine, developed by physician and scientist Edward Jenner at the turn of the previous century, was an effective way of preventing smallpox. Yet, not everyone was happy about the new law.
Pockets of resistance arose quickly, and in 1867, the National Anti-Compulsory Vaccination League was founded, with concerns not dissimilar to those of today’s vaccine skeptics. The group questioned whether the vaccine might harm its recipients; they believed doctors were somehow profiting from the vaccination law; and they railed against the absence of personal choice.
Today, with the measles epidemic, we are back, effectively, to where Brits found themselves in the 19th century. But there is one big difference. Then, there was incomplete knowledge of how diseases spread and how vaccinations prevent them. Now, the issue isn’t so much a lack of information but the lack of a proper foundation on which to process information. Doctors need to help provide that foundation for their patients.
Not long ago, the father of one of my pediatric patients asked me a simple question about vaccinations: “How is giving a medication to my healthy child supposed to be a good thing?”
It was a eureka moment for me to hear that he considered vaccines to be medicines rather than what they actually are: prevention tools. A vaccine needs to be seen more like a helmet or a seat belt — preventing something from happening rather than treating something that’s there. I tried to clarify how vaccines work by using an analogy. I asked him if he read aloud to his son. He did. I likened vaccines to what happens when he repeatedly points to and identifies an object in a favorite book. Over time, his son learns what the object looks like, and when he sees it in real life, he will recognize it.
Similarly, a vaccine contains protein identifiers of the virus or bacteria it is aimed at preventing. It doesn’t have the complete virus or bacteria itself — just as a book has only a picture of, say, a zebra, not the actual animal. The immune system learns to “recognize” the identifiers, and is thus able to mount a strong response if and when it encounters the actual virus or bacteria, much as a child could recognize a real zebra in the zoo because of exposure to pictures of one.
Two other concepts doctors need to help their patients understand are causality and risk. Causality is tricky. In part, it’s a matter of timing. If your toe hurts immediately after you hit it against the door, it’s reasonable to assume the door caused it. But timing alone isn’t enough; there also must be plausibility — a rational reason to connect one thing with another. There is a rational reason, after years of study, to connect smoking to lung cancer, for example. But even though the symptoms of autism often first emerge in children at around the same age that they are being vaccinated, there’s no biologically plausible basis for a connection — any more than, say, than if a child who prefers to wear yellow every day develops autism, we could establish that yellow clothing caused the condition.
Similarly, and related to this, most of us are poor judges of risk and its role in how we process uncertainty. We fear dying in a plane crash more than in a car accident, though the latter is far more likely. With vaccines, hearing about a rare side effect, especially if coupled with an emotional element (having a close friend who shares the same fear, for example), can make the risk of being vaccinated seem far greater than the risks posed by the disease it would prevent, even though quite the opposite is true.
That said, it’s important for doctors to empathize with parents who express these fears. Whether or not a fear is fully rational, it’s real. One thing that can help is explaining not only the research behind vaccine risk, but also the rigor with which research articles are appraised and reviewed. It was that rigor that exposed, in the end, the fraudulent “research” that suggested a vaccine-autism connection. It was also scientific rigor over decades of meticulous research that has established the safety and efficacy of vaccines. And the inquiry doesn’t stop when a vaccine hits market. The Vaccine Adverse Event Reporting System is a U.S. government-sponsored safety surveillance program aimed at quickly spotting problems with vaccines. In the past, it has been able to rapidly identify potential problems, as it did with a first-generation rotavirus vaccine, for instance.
A final thing doctors might want to share with reluctant patients is something that I myself was surprised to learn: Vaccines are only a tiny fraction of pharmaceutical profit. So the argument in vaccine-hesitant communities that vaccines are promoted largely because they provide huge profits for drug companies simply doesn’t pan out.
Part of the reason there’s such a disconnect between physicians and vaccine-skeptical patients is that they don’t come into the discussion speaking the same language. The more we can learn about each others’ perspectives, the better it will be for children and for public health.
**Originally published in the Los Angeles Times**