Two recent US initiatives: the New York Times’ rare disease column and a TBS series called Chasing the Cure are pointing to an emerging trend in the media: the idea that medicine can crowdsource ideas to diagnose difficult cases. But, can it be used to help diagnose patients, and what are the potential pitfalls?
Reaching a correct diagnosis is the crucial aspect of any consultation, but misdiagnosis is common, with some studies suggesting that medical diagnoses can be wrong, up to 43% according to some studies. This concern was the focus of a recent report by the World Health Organization. Individual doctors may overlook something, draw the wrong conclusion, or have their own cognitive biases which means they make the wrong diagnosis. And while hospital rounds, team meetings, and sharing cases with colleagues are ways in which clinicians try to guard against this, medicine could learn from the tech world by applying the principles of “network analysis” to help solve diagnostic dilemmas.
A recent study in JAMA Network Open applied the principle of collective intelligence to see whether combining physician and medical students’ diagnoses improved accuracy. The research, led by Michael Barnett, of the Harvard Chan School of Public Health, in collaboration with the Human Diagnosis Project, used a large data set from the Human Diagnosis Project to determine the accuracy of diagnosis according to level of training: staff physicians, trainees (residents and fellows), and medical students. First, participants were provided with a structured clinical case and were required to submit their differential diagnosis independently. Then the researchers gathered participants into groups of between two and nine to solve cases collectively.
The researchers found that at an individual level, trainees and staff physicians were similar in their diagnostic accuracy. But even though individual accuracy averaged only about 62.5%, it leaped to as high as 85.6% when doctors solved a diagnostic dilemma as a group. The larger the group, which was capped at nine, the more accurate the diagnosis.
The Human Diagnosis Project now incorporates elements of artificial intelligence, which aims to strengthen the impact of crowdsourcing. Several studies have found that when used appropriately, AI has the potential to improve diagnostic accuracy, particularly in fields like radiology and pathology, and there is emerging evidence when it comes to opthamology.
However, an issue with crowdsourcing and sharing patient data is that it’s unclear how securely patient data are stored and whether patient privacy is protected. This is an issue that comes up time and time again, along with how commercial companies may profit from third parties selling these data, even if presented in aggregate.
As such, while crowdsourcing may help reduce medical diagnostic error, sharing patient information widely, even with a medical group, raises important questions around patient consent and confidentiality.
The second issue involves the patient-physician relationship. So far it doesn’t appear that crowdsourcing has a negative impact in this regard. For instance, in one study over half of patients reported benefit from crowdsourcing difficult conditions, however very few studies have explored this particular issue. It’s entirely possible that patients may want to crowdsource management options for instance, and obtain advice that runs counter to their physicians’ and theoretically this could be a source of tension.
The last issue involves consent. A survey, presented at the Society of General Internal Medicine Annual Meeting in 2015, reported that 80% of patients surveyed consented to crowdsourcing, with 43% preferring verbal consent, and 26% preferring written consent (31% said no consent was needed). Some medico-legal recommendations, however, do outline the potential impact on physicians who crowdsource without the appropriate consent, in addition to the possible liabilities around participating in a crowdsourcing platform when their opinion ends up being incorrect. Clearly these are issues that have no clear answer: and we may end up in a position where patients are eager to crowdsource difficult-to-diagnose (and treat) sets of symptoms, but physicians exercise sensible caution.
It’s often said that medical information doubles every few months, and that time is only shortening. Collectively, there’s an enormous amount of medical knowledge and experience both locally and globally that barely gets tapped into when a new patient reaches our doors in any given hospital or clinic. Applying network intelligence to solving the most challenging, as well as the illusory “easy,” diagnosis, may give patients the best of both worlds: the benefit of their doctor’s empathetic care with the experience and intelligence of a collective many, but the potential downsides deserve attention as well.
**Originally published in the British Medical Journal**
Here’s why communicating public health risk during an epidemic is so challenging
Ann, a friend and mentor in her 50s, exclaimed over coffee at the end of January: “You know, Amazon is sold out of medical masks. You just can’t get any now. But I’m going upstate this weekend, so I should have better luck there.” I looked at her quizzically. At the time, the World Health Organization (WHO) had not yet announced that the newly named disease COVID-19 (formerly known as 2019-nCoV), caused by the virus SARS-CoV-2 (or simply “coronavirus”) was a Public Health Emergency of International Concern (PHEIC), but this announcement was delayed for several days. Besides, masks should only be reserved for people with symptoms.
Ann is an intellectual, someone who doesn’t easily head into panic mode (this helped her in her law career immensely, and later as a CEO and business leader). But in that moment, she had made up her mind: the masks would be a prudent thing to purchase, despite the lack of indication that they were needed. Effectively, Ann was hedging on the idea that, with the messages she received through the media and her friends, it would be better to be more conservative and overly prepared for the worst, given the potential consequences of being underprepared.
It immediately struck me that, despite being trained in both epidemiology and medicine, I wasn’t entirely sure what to advise Ann at the time: the messages I had received, and articles I had read, were no more consistent. There was still much uncertainty around the coronavirus in terms of how serious it was projected to be and what ordinary citizens could do to minimize risk. We all make decisions every day despite uncertainty, and when emotions come into play it can make things trickier.
But when it comes to public health, where the risks of sending the “wrong” message can have devasting consequences—unnecessary anxiety on the one hand (which can take an immense psychological toll) and thousands of unnecessary deaths on the other. To me, one thing is clear: the messaging around coronavirus thus far has been far from ideal, which suggests that uncertainty in a public health emergency is a wrench that can have devastating consequences if it isn’t harnessed appropriately.
Coronavirus is a moving target, as most epidemics are. As a Canadian, I watched with curiosity when Canadian airports decided on January 17 not to screen travelers for coronavirus (the effectiveness of screening is debatable, but the U.S. had already mandated it). But this then changed a mere one day later. The messaging was all over the place: “We thought it wasn’t necessary, but oops, now it might be.” Initially, the WHO wasn’t as concerned: the information and data about coronavirus wasn’t enough to call it an “emergency,” perhaps in part because the institution was reliant on a whole host of assumptions, such as the accuracy of data from China, a country not exactly known for transparency (with some noting the government may have purposely misled the public).
Gradually, the WHO became more concerned, finally on January 30 labelling coronavirus as a PHEIC, which implies a seriousness and a whole other set of other measures should be taken. Now countries as far and wide as Italy, Iran, Korea, and Spain are reporting a high concentration of cases. As of Wednesday, February 26, over 2,700 people had died worldwide from coronavirus since December and over 81,000 were infected globally. To put that in perspective, the SARS epidemic of 2003, which began in November 2002, infected over 8,000 people and led to 774 deaths in a period of six months.
Today the core messages remain unclear. For instance, the WHO has refused to officially advise no travel to China, but the U.S. State Department made this advisory earlier this month. For weeks we also received mixed messaging about human-human transmission, which is now clear, and more disturbingly that it can occur even when someone isn’t symptomatic (though it is rare). Even epidemiologists had trouble deciding how bad it really is. One reason is that a traditional data point in epidemiology, the R0 value, which is the average number of people an infected person is expected to transmit a disease to, is limited in its predictability.
Still, several doctors and public health professionals have taken to social media to remind the world that the flu kills more, as an attempt to dissuade fears, but COVID-19 is more severe, not just in its the ability to send more affected persons into intensive care (like SARS), and that it can kill even young and healthy hosts (as opposed to the more vulnerable who are more affected by the flu), and by most accounts has a higher case fatality rate (the proportion of those with the virus who die), somewhere around 2 percent (though this rate may be lower—0.7 percent—outside of China’s Hubei province) compared to the flu (which has a case fatality rate of around 0.1 percent).
All of this whiplash points to one perhaps uncomfortable thing: no one really knows how bad COVID-19 is, and how much damage it could eventually lead to. We know from postmortems of how SARS and Ebola were approached—both epidemics that provided an opportunity for bodies like the WHO and the Centers for Disease Control to learn from (the CDC provided a report on their Ebola response, and the WHO released a report on outbreak communication immediately after SARS)—that waiting too long to sound the alarm can be disastrous. We also know that the early predictions were based on assuming that China was being transparent and honest about their situational assessment, something we now understand was not the case.
I recently spoke with Kathryn Bertram, of the Johns Hopkins Center for Communication Programs (JHU CCP), who pointed me to the extended parallel process model as a helpful starting point to examine public health messaging during an epidemic. It considers both our rational reactions and emotional reactions (primarily fear) to help determine the best course of action for behavior. On the rational end, we must ask ourselves about “efficacy”—this refers to the effectiveness of a solution (for instance wearing a face mask or avoiding travel to China) and well as our perceptions on how as individuals we can institute this solution effectively. On the emotional end, we ask ourselves about the severity—how severe might it be if we, as individuals were infected, as well as susceptibility (how likely we might contract it).
Herein lies the issue: the perceived threat rests largely on the information we receive from experts. If the threat is high, we make decisions to take protective action. If we are told that the threat is low or even trivial, we are less motivated to protect ourselves even if we have the resources to do so. When an epidemic is underway, uncertainty can create fertile ground for mixed messages and inconsistency, which in itself can breed mistrust and fear.
Reflecting back to my conversation with Ann, I’m reminded of Annie Duke’s book Thinking in Bets, in which she makes a persuasive argument that, as individuals, we’re often required to make decisions based on having incomplete information. Duke uses the analogy of poker, where decisions are made based on an uncertain future. A good decision, despite this uncertainty, rests on whether we use the right process to come to that decision.
As individuals, we also benefit from thinking back to situations where we may have chosen one way but felt if we had a similar choice again we would choose differently, so our memories play a role as well (and arguably for public health we can rely on our collective memory from other coronavirus epidemics, like SARS). She likens our decisions to bets: given the information available to us, along with our memories of how past decisions panned out, and acknowledging that some of the outcome is due to chance, what might be the best choice to make that would most likely provide the most benefit for our future selves?
Bertram underscores the core risk communication principles, which can also be applied to media covering the epidemic: communicate often, communicate what is and isn’t known clearly, and provide simple action items for individuals to take (so things like handwashing).
Similarly, public health stakeholders should communicate what is and isn’t known, coordinate messages to help ensure consistency, and perhaps most importantly, acknowledge that their views (and thus their messaging) may change quickly; thankfully more recently media organizations are choosing to express this uncertainty and a recent op-ed in the New York Times underscores many of these principles, as “people react more rationally and show greater resilience to a full-blown crisis if they are prepared intellectually and emotionally for it.” The authors also urge that we consider using the term “pandemic” (though the WHO is not yet comfortable with this).
Effectively, while the WHO still presents a hopeful view, it and other organizations played poker on a global scale—and the chips they were playing belonged to entire communities. Their decisions and messages matter, and on balance, it might be best to bet that the consequences of underestimating the severity of the pandemic may be worse than overestimating it. The alternative, which brings to mind the dog meme “this is fine,” could lead to both distrust and potentially thousands of unnecessary deaths. It seems that, despite the WHO finally conceding that COVID-19 continues to poses a “grave threat” to the world and may qualify as the long-dreaded “disease X,” the briefing yesterday remained vague and hesitant, and even domestic messaging about whether the virus is contained or spreading continues to be inconsistent. Some have even suggested we finally accept that COVID-19 may be “unstoppable.” Clearly, we’re still down a few chips.
**Originally published in Scientified American, on February 26 2020**
There’s more than meets the eye — here are some tips to help avoid confusion.
In August 2019, JAMA Pediatrics, a widely respected journal, published a study with a contentious result: Pregnant women in Canada who were exposed to increasing levels of fluoride (such as from drinking water) were more likely to have children with lower I.Q. Some media outlets ran overblown headlines, claiming that fluoride exposure actually lowers I.Q. And while academics and journalists quickly pointed out the study’s many flaws — that it didn’t prove cause and effect; and showed a drop in I.Q. only in boys, not girls — the damage was done. People took to social media, voicing their concerns about the potential harms of fluoride exposure.
We place immense trust in scientific studies, as well as in the journalists who report on them. But deciding whether a study warrants changing the way we live our lives is challenging. Is that extra hour of screen time really devastating? Does feeding processed meat to children increase their risk of cancer?
As a physician and a medical journalist with training in biostatistics and epidemiology, I sought advice from several experts about how parents can gauge the quality of research studies they read about. Here are eight tips to remember the next time you see a story about a scientific study.
1. Wet pavement doesn’t cause rain.
Put another way, correlation does not equal causation. This is one of the most common traps that health journalists fall into with studies that have found associations between two things — like that people who drink coffee live longer lives — but which haven’t definitively shown that one thing (coffee drinking) causes another (a longer life). These types of studies are typically referred to as observational studies.
When designing and analyzing studies, experts must have satisfactory answers to several questions before determining cause and effect, said Elizabeth Platz, Sc.D., a professor of epidemiology and deputy chair of the department of epidemiology at the Johns Hopkins Bloomberg School of Public Health. In smoking and lung cancer studies, for example, researchers needed to show that the chemicals in cigarettes affected lung tissue in ways that resulted in lung cancer, and that those changes came after the exposure. They also needed to show that those results were reproducible. In many studies, cause and effect isn’t proven after many years, or even decades, of study.
2. Mice aren’t men.
Large human clinical studies are expensive, cumbersome and potentially dangerous to humans. This is why researchers often turn to mice or other animals with human-like physiologies (like flies, worms, rats, dogs and monkeys) first.
If you spot a headline that seems way overblown, like that aspirin thwarts bowel cancer in mice, it’s potentially notable, but could take years or even decades (if ever) to test and see the same findings in humans.
3. Study quality matters.
When it comes to study design, not all are created equal. In medicine, randomized clinical trials and systematic reviews are kings. In a randomized clinical trial, researchers typically split people into at least two groups: one that receives or does the thing the study researchers are testing, like a new drug or daily exercise; and another that receives either the current standard of care (like a statin for high cholesterol) or a placebo. To decrease bias, the participant and researcher ideally won’t know which group each participant is in.
Systematic reviews are similarly useful, in that researchers gather anywhere from five to more than 100 randomized controlled trials on a given subject and comb through them, looking for patterns and consistency among their conclusions. These types of studies are important because they help to show potential consensus in a given body of evidence.
Other types of studies, which aren’t as rigorous as the above, include: cohort studies (which follow large groups of people over time to look for the development of disease), case-control studies (which first identify the disease, like cancer, and then trace back in time to figure out what might have caused it) and cross-sectional studies (which are usually surveys that try to identify how a disease and exposure might have been correlated with each other, but not which caused the other).
Next on the quality spectrum come case reports (which describe what happened to a single patient) and case series (a group of case reports), which are both lowest in quality, but which often inspire higher quality studies.
4. Statistics can be misinterpreted.
Statistical significance is one of the most common things that confuses the lay reader. When a study or a journalistic publication says that a study’s finding was “statistically significant,” it means that the results were unlikely to have happened by chance.
But a result that is statistically significant may not be clinically significant, meaning it likely won’t change your day-to-day. Imagine a randomized controlled trial that split 200 women with migraines into two groups of 100. One was given a pill to prevent migraines and another was given a placebo. After six months, 11 women from the pill group and 12 from the placebo group had at least one migraine per week, but the 11 women in the pill group experienced arm tingling as a potential side effect. If women in the pill group were found to be statistically less likely to have migraines than those in the placebo group, the difference may still be too small to recommend the pill for migraines, since just one woman out of 100 had fewer migraines. Also, researchers would have to take potential side effects into account.
The opposite is also true. If a study reports that regular exercise helped relieve chronic pain symptoms in 30 percent of its participants, that might sound like a lot. But if the study included just 10 people, that’s only three people helped. This finding may not be statistically significant, but could be clinically important, since there are limited treatment options for people with chronic pain, and might warrant a larger trial.
5. Bigger is often better.
Scientists arguably can never fully know the truth about a given topic, but they can get close. And one way of doing that is to design a study that has high power.
“Power is telling us what the chances are that a study will detect a signal, if that signal does exist,” John Ioannidis, M.D., a professor of medicine and health research and policy at Stanford Medical School said via email.
The easiest way for researchers to increase a study’s power is to increase its size. A trial of 1,000 people typically has higher power than a trial of 500, and so on. Simply put, larger studies are more likely to help us get closer to the truth than smaller ones.
6. Not all findings apply to you.
If a news article reports that a high-quality study had statistical and clinical significance, the next step might be to determine whether the findings apply to you.
If researchers are testing a hypothetical new drug to relieve arthritis symptoms, they may only include participants who have arthritis and no other conditions. They may eliminate those who take medications that might interfere with the drug they’re studying. Researchers may recruit participants by age, gender or ethnicity. Early studies on heart disease, for instance, were performed primarily on white men.
Each of us is unique, genetically and environmentally, and our lives aren’t highly controlled like a study. So take each study for what it is: information. Over time, it will become clearer whether one conclusion was important enough to change clinical recommendations. Which gets to a related idea …
7. One study is just one study.
If findings from one study were enough to change medical practices and public policies, doctors would be practicing yo-yo medicine, where recommendations would change from day to day. That doesn’t typically happen, so when you see a headline that begins or ends with, “a study found,” it’s best to remember that one study isn’t likely to shift an entire course of medical practice. If a study is done well and has been replicated, it’s certainly possible that it may change medical guidelines down the line. If the topic is relevant to you or your family, it’s worth asking your doctor whether the findings are strong enough to suggest that you make different health choices.
8. Not all journals are created equal.
Legitimate scientific journals tend to publish studies that have been rigorously and objectively peer reviewed, which is the gold standard for scientific research and publishing. A good way to spot a high quality journal is to look for one with a high impact factor — a number that primarily reflects how often the average article from a given journal has been cited by other articles in a given year. (Keep in mind, however, that lower impact journals can still publish quality findings.) Most studies published on PubMed, a database of published scientific research articles and book chapters, are peer-reviewed.
Then there are so-called ‘predatory’ journals, which aren’t produced by legitimate publishers and which will publish almost any study — whether it’s been peer-reviewed or not — in exchange for a fee. (Legitimate journals may also request fees, primarily to cover their costs or to publish a study in front of a paywall, but only if the paper is accepted.) Predatory journals are attractive to some researchers who may feel pressure to ‘publish or perish.’ It’s challenging, however, to distinguish them from legitimate ones, because they often sound or look similar. If an article has grammatical errors and distorted images, or if its journal lacks a clear editorial board and physical address, it might be a predatory journal. But it’s not always obvious and even experienced researchers are occasionally fooled.
Reading about a study can be enlightening and engaging, but very few studies are profound enough to base changes to your daily life. When you see the next dramatic headline, read the story — and if you can find it, read the study, too (PubMed or Google Scholar are good places to start). If you have time, discuss the study with your doctor and see if any reputable organizations like the Centers for Disease Control and Prevention, World Health Organization, American Academy of Pediatrics, American College of Cardiology or National Cancer Institute have commented on the matter.
Medicine is not an exact science, and things change every day. In a field of gray, where headlines sometimes try to force us to see things in black-and-white, start with these tips to guide your curiosity. And hopefully, they’ll help you decide when — and when not to — make certain health and lifestyle choices for yourself and for your family.
**Originally published in the New York Times**
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?
Roger Holzberg
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**