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**
A few months ago, the Centers for Disease Control and Prevention published a report about a young boy from Connecticut who developed lead poisoning as a direct result of his parents giving him a magnetic healing bracelet for teething. It seems every few months a story will cover a tragic case of a parent choosing an unconventional medical treatment that causes harm.
More often, the alternative treatments parents choose pose little risk to their kids — anything from massage therapy to mind-body therapies like mindfulness meditation and guided imagery. Research indicates that overall, there are few serious adverse events related to using alternative therapies. But when they do occur, they can be catastrophic, in some cases because caregivers or alternative care providers are poorly informed on how to recognize the signs of serious illness.
The National Center for Complementary and Integrative Health, part of the National Institutes of Health, now refers to these alternative treatments as complementary health approaches, or C.H.A. They are defined as “a group of diverse medical and health care systems, practices and products not presently considered to be part of conventional Western medicine.” In some cases they complement traditional care. In others they are used in place of standard medical practices.
It’s a polarizing subject that unfortunately gets muddled with conversations about anti-vaccination. But while some anti-vaxxers use complementary health approaches, people who use C.H.A. don’t necessarily doubt vaccine effectiveness.
What’s less clear is the proportion of parents choosing complementary health approaches for their children, for what conditions, and their perceptions of effectiveness. We also know very little about parents’ willingness to discuss their use with their child’s doctor, and most doctors receive little training in C.H.A. use, especially in children, and how to counsel parents about it.
To explore these questions, we surveyed parents in a busy emergency room in eastern Ontario, Canada. As reported in our recent study, just over 60 percent said they gave their child a C.H.A. within the last year. Vitamins and minerals (59 percent) were the most common ingested treatment, and half the parents used massage. Our research found that parents with a university-level education were more likely to use a complementary treatment than those with less education.
Parents also perceived most of the C.H.A. that they used — from vitamins and minerals to aromatherapy to massage — as effective. However, less than half of parents felt that homeopathy or special jewelry would be helpful.
As reported in our recent paper, we then asked parents if they had tried a complementary therapy for the problem at hand before they came to the emergency room. Just under one-third reported using C.H.A. for a specific condition, most often for gastrointestinal complaints. Interestingly, in the case of emergency care, there was no correlation with the parents’ level of education.
In work we previously presented at the International Congress of Pediatrics, we asked these parents whether they believed their provider — a nurse practitioner or a doctor — was knowledgeable about complementary medicine. About 70 percent believed their health provider was knowledgeable about C.H.A., although this perception was less likely among parents with a university-level education. Surprisingly, 88 percent said they felt comfortable discussing their use of C.H.A. with their medical provider.
Previous reports have found that only between 40 percent and 76 percent actually disclose C.H.A. use with their doctor. In our study, we were talking to parents who had brought their child to an emergency room, where they would be more likely to talk about whatever treatments they had tried. In many cases, parents may refrain from even taking their child to the doctor if their problem is not a serious one. So it is likely that the overall proportion of parents who use C.H.A. for their children is an underestimate.
Our findings underscore the need for parents and their child’s health providers to have more open conversations about what they are giving to their child for health reasons.
Medical providers also need to be actively asking whether C.H.A. is used and stay up-to-date on current evidence about complementary therapies, including potential interactions with any medications they may also be taking. Much of this information is summarized on the N.C.C.I.H. website.
Here are some ways parents can approach the issue of alternative therapies with their doctors:
■ Write down everything your child is using as though it’s a medication. Include any special diets, teas and visits to other complementary medicine providers.
■ Keep track of any positive and negative results from C.H.A. that you notice —- including no effect — and the cost involved
■ If your child’s health provider doesn’t ask about C.H.A., start the conversation.
Physicians and other medical providers should:
■ Learn more about these treatments and the evidence behind them. The N.C.C.I.H. is a good place to start.
■ Try not to be judgmental; causing a rift with a parent because you might not agree with their choices may cause a breakdown in the therapeutic relationship.
■ Evaluate risks and benefits, and be aware of what is unknown about the specific C.H.A. being used. Make efforts to learn more about the therapy and take action if there are clear side effects and risks, documenting the discussion where appropriate.
Parents and doctors are on the same team when it comes to caring for a child’s health. Taking time to explore what parents and children are using, including any therapies that lie outside the scope of conventional medical practice, provides an opportunity to have open and honest discussions about risk, benefits and safety around complementary health approaches.
**Originally published in the New York Times**
Darren Sudman is the CEO of Simon’s Heart which aims to prevent sudden cardiac arrest in children. The organization raises awareness around sudden cardiac death in children, provides free heart screenings, distributes AED devices, promotes research, and advocates for lifesaving legislation. Sudman spoke with me in August from Philadelphia.
We met back at TEDMED a few years ago and I was very struck by your passion about Simon’s Heart. But you had an interesting journey before founding your organization. Share a bit of that with readers.
I wanted to be a lawyer to make a difference in the world. The area of law I was practicing in wasn’t that fulfilling so I left the practice after five years. I did some lobbying on Capitol Hill for a non-profit in Washington D.C. Then I worked for America Online when the internet was becoming a thing, and my wife and I moved to Philadelphia where I worked in real estate and for a credit card company. I got my high school teaching certificate in history – I taught one semester at a local high school then taught another semester at a private school but went back into business since it was hard to find full time work. My work history never made sense until I started Simon’s Heart. Now, everything has come together.
1.Tell me about what Simon’s Heart does.
We raise awareness about sudden cardiac death and cardiac arrest in children, and believe that ECG screening should be the standard of care for all children, especially those who have lost a family member under the age of fifty, suddenly and unexpectedly.
We want people to know cardiac arrest isn’t just an adult thing. It’s the number one cause of death in student athletes and takes the lives of thousands of kids each year. Most of these conditions are detectable and treatable. In terms of raising awareness, we do this in a few ways. We worked with lawmakers and organizations in 14 states to pass Sudden Cardiac Arrest Prevention Act. That requires parents, coaches, students to be familiar with risks and warnings. Another way is through campaigns with colleges and professional sports teams, for instance with Philadelphia Flyers. All professional athletes get their hearts checked but through the program with the Flyers we have the “Overtime Challenge,” where, everytime the team goes into sudden death overtime, we donate an AED device to a youth facility. Most of these centers have never had an AED device available. Still another way is through HeartBytes, a digital registry of seemingly healthy kids that we built four years ago with Pulse Infoframe. We wanted to gather data we collect at heart screenings – EKG, heart images, and de-identify them to make it available researchers. That data has produced five abstracts, and will be presented at the American Heart Association conference as an abstract this Fall.
2.Let’s talk about what happened in 2004, which led to creating Simon’s Heart.
Simon was my second child, born on October 21 2004. He was a happy and healthy 3 month old to our knowledge, but one day he didn’t wake up, and we found he had died in his sleep. It was determined to be sudden infant death syndrome (SIDS). Our pediatrician advised we get our hearts checked. My wife Phyllis was diagnosed with a heart rhythm disturbance called Long QT Syndrome. There is a link between Long QT and SIDS. As well, Long QT is one of a handful of conditions that leads to sudden death in young athletes. We wanted to find ways to prevent another family from losing a child so our first initiative was to provide free heart screenings for students through school, working with a local pediatric cardiologist. This led to founding Simon’s Fund, which is now Simon’s Heart, to expand the impact. We now have a network of 40 cardiologists. On a personal level, after Simon’s death, my other kids, Sally (who was two when Simon died) and our son Jaden, were also screened.
3.What you experienced is something no parent ever expects to face. What can you share about grief, and what getting to your ‘new normal’ was like after something so unimaginably devastating.
Having met lots of grieving parents over the years, there’s no formula. I can’t speak for Phyllis, but what worked for me was that my daughter was two and she needed me to get out of bed everyday. She was really young and didn’t have a grasp of what was going on, and I had to take care of her. That forced me to wake up and live everyday as best I could – she was my motivation. We didn’t know it at the time, but Simons Heart was a tremendous help for us to move forward in life. It not only keeps Simon present in our life, but it changes the narrative: We just suffered one of the worst tragedies but through it we could create new narratives that involve helping prevent this from happening to other children, meeting families with similar experiences. When Jaden, our third child, came home, he brought another ray of sunshine to our house and reinforced the fact that life goes on and there’s still goodness in life.
4.What is the biggest misconception about grief?
I wish more people embraced it. I got some really unique advice from a co-worker who really had no education or expertise in the field of grief. His advice to me was “when you feel grief let it pull you under and don’t resist it – it’s temporary and when you’re ready, you’ll come back up.” This idea continues to work for me. Instead of resisting those emotions it’s sometimes best to let them run their course and step up and move forward again. So many people start to panic or resist the feelings of grief, when in reality it’s one of the most normal emotions we have as human beings. I believe those experiences also help us empathize better with one another as well.
5.That’s sage advice. Switching gears now, why is cardiac screening important? I come from a world where, from both medical and epidemiology point of view, there can be harms with overscreening – false positives for instance. How have your initiatives been received by the medical and public health communities?
I’ve looked into population health screenings. The concerns about cardiac screenings for kids are identical to concerns around mammographies and colonscopies. They key is to admit what we don’t know and to stay curious. So if someone criticizes EKGs because of their high false positive rate, that shouldn’t end the discussion. There’s always a high false positive rate when don’t know what looking for – at this time we don’t know normal variations in healthy childrens’ hearts. So this is why collecting data is important. I don’t see these objections as roadblocks, but I see it as disingenuous to criticize screening as expensive or with false positives without looking at how we can solve the problem. I read a. paper recently where a doctor in the 1950s advised against mammography, saying “If I cant feel it not there,” – that was the mindset then, and it has obviously changed. If that doctor embraced our ignorance and remained curious, he might have been part of solution. At the same time, I’m not saying that EKG screenings are the endgame here, but there is good research out there that shows that an EKG, when coupled with a physical and medical history, is the most effective method of detecting heart conditions.
6.This leads into my next question – there is a lot of interest in wearables now, particularly for things like sleep and cardiac tracking. Do you see future collaborations with tech?
It’s not crazy to say that one day every kid will have a wearable and it will be able to conduct a twelve lead EKG instead of a two-lead device. By then we will hopefully know enough about seemingly healthy kids’ hearts, and if anything looks abnormal kids will get alert. But that is some time away; it’s not where industry is right now.
7.What does thriving mean to you?
Thriving means that you appreciate your skills and surroundings, and find a way to make an impact on those around you.
8.What are you most looking forward to now in general and with your company?
I’m excited because cardiac screening gaining more traction in medical community and the younger more curious physicians like you are taking note of the importance of prevention. The other thing we just launched is the CPR JukeBox where we have a 10 foot by 10 foot tent and an 80 song playlist with modern songs that are 100 beats per minute. We teach kids how to do compressions on red kickballs. It’s a big shift for us. With Simon’s Heart, wherever we attended events, we were the table to avoid. We talked about kids dying. Now, we have fun with families, give them a memorable experience, and teach them a lifesaving skill.
Stanford Graduate School of Business researcher Michal Kosinski set out to answer the latter question in a controversial new study. Using a deep-learning algorithm, Kosinski and his colleagues inputted thousands of photos of white Americans who self-identified as either gay or straight, and tagged them accordingly. The software then learned physical commonalities — micro quantitative differences based on facial measurements — to distinguish gay from straight features.
His team found that the computer had astonishingly accurate “gaydar,” though it was slightly better at identifying gay men (81 percent accuracy) than lesbians (74 percent accuracy). Notably, the software outperformed human judges in the study by a wide margin.
Kosinski’s work was based on previous but controversial research that suggests that the hormonal balance in the womb influences sexual orientation as well as appearance. “Data suggests that [certain groups of] people share some facial characteristics that are so subtle as to be imperceptible to the human eye,” Kosinski says. The study, according to Kosinski, merely tested that theory using a respected algorithm developed by Oxford Vision Lab.
Predictably, rights groups, including GLAAD and Human Rights Campaign, were outraged by Kosinski’s study, simultaneously questioning his methods while suggesting that his program was a threat to members of the gay community.
Kosinski is known as both a researcher and a provocateur. He says that one of the goals for the study was to warn us of the dangers of artificial intelligence. He designed his research, he says, to goad us into taking privacy issues around machine learning more seriously. Could AI “out” people in any number of ways, making them targets of discrimination?
But for the sake of argument, let’s suppose that facial-recognition technology will keep improving, and that machines may someday be able to quickly detect a variety of characteristics — from homosexuality to autism — that the unaided human eye cannot. What would it mean for society if highly personal aspects of our lives were written on our faces?
I remember the first time I saw a baby with the condition, which appears in patients who have a third copy of chromosome 21, instead of the usual pair. The infant was born in a community hospital to a mother who had declined genetic screening. As he lay in his cot a few hours after birth, his up-slanted “palpebral fissures” (eyelid openings) and “short philtrum” (groove in the upper lip), among many other things, seemed subtle. It only took a glance from my attending, an experienced pediatrician, to know that the diagnosis was likely. (Later on, a test called a karyotype confirmed the presence of an extra chromosome.)
Could AI someday replace a professional human diagnostician? Just by looking at a subject, Angela Lin, a medical geneticist at Massachusetts General Hospital, can discern a craniofacial syndrome with a high degree of accuracy. She also uses objective methods — measuring the distance between eyes, lips, and nose, for example — for diagnostic confirmation. But this multifaceted technique is not always perfect. That’s why she believes facial recognition software could be useful in her work.
Lin stresses that facial recognition technology is just one of many diagnostic tools, and that in most cases it’s not a substitute for a trained clinical eye. She also worries about how widespread use of facial recognition software could be problematic: “The main barrier for me is privacy concerns. . . we want to be sure the initial image of the person is deleted.”
Autism, for one, may involve physical characteristics too subtle for the human eye to detect. A few months ago, an Australian group published a study that used facial-recognition technology to discern the likelihood of autism using 3-D images of children with and without the condition. As in Kosinski’s study, the computer “learned” the facial commonalities of those with autism and successfully used them as a predictive tool.
The lead study author, Diana Tan, a PhD candidate at University of Western Australia School of Psychological Sciences, warns that the technology has its limitations. A diagnosis of autism requires two distinct elements: identifying social and communication challenges, and behavioral analysis of repetitive behaviors and restrictive interests.
Some scientists believe the social-communication difficulties may be linked to elevated prenatal testosterone — known as the “extreme male brain” theory of autism. Facial masculinization may result from this excessive testosterone exposure, and the computer algorithm was good at picking it up, which could explain its ability to predict autism through a photo alone.
The facial recognition technology was less successful in tracking traits related to severity: that is, repetitive behaviors and restrictive interests. While the computer successfully identified children with autism whose behaviors were marked by lack of empathy, sensitivity, and other typically male traits (i.e. social-communication issues), it was less successful in diagnosing the children who predominantly exhibited restrictive and repetitive behaviors. This suggests that the latter aspects may not be related to hormone exposure and the its related physical changes.
“While [the study] supports the ‘hypermasculine brain theory’ of autism,” Tan says, “it’s not a perfect correlation.”
“In my view,” she says, “[our technique] should be complementary to existing behavioral and development assessments done by a trained doctor, and perhaps one day it could be done much earlier to help evaluate risk,” adding that 3-D prenatal ultrasounds may potentially provide additional data, allowing autism risk to be predicted before birth.
Regardless of the technology’s apparent shortcomings, companies have been quick to leverage big data and facial-recognition capabilities to assist diagnosticians. Boston-based FDNA has been developing technology for use in clinical settings over the last five years and released a mobile app for professionals called Face2Gene in 2014. In principle, it’s similar to the facial recognition software used in Tan’s and Kosinski’s studies, but — more than just study pure science — it’s intended to do what doctors like Lin spend decades learning: make diagnoses of genetic conditions based on facial characteristics.
Last year, the company teamed up on a study to use the app to help with autism diagnoses. The work has not yet been validated in the clinical setting, but it is already gaining adherents.
“We have over 10,000 doctors and geneticists in 120 countries using the technology,” says Jeffrey Daniels, FDNA’s marketing director. “As more people use it, the database expands, which improves its accuracy. And in cases where doctors input additional data” — for instance, information about short stature or cognitive delay, which often helps narrow down a diagnosis — “we can reach up to 88 percent diagnostic accuracy for some conditions.”
Apple, Amazon, and Google have all teamed up with the medical community to try to develop a host of diagnostic tools using the technology. At some point, these companies may know more about your health than you do. Questions abound: Who owns this information, and how will it be used?
Could someone use a smartphone snapshot, for example, to diagnose another person’s child at the playground? The Face2Gene app is currently limited to clinicians; while anyone can download it from the App Store on an iPhone, it can only be used after the user’s healthcare credentials are verified. “If the technology is widespread,” says Lin, “do I see people taking photos of others for diagnosis? That would be unusual, but people take photos of others all the time, so maybe it’s possible. I would obviously worry about the invasion of privacy and misuse if that happened.”
Humans are pre-wired to discriminate against others based on physical characteristics, and programmers could easily manipulate AI programming to mimic human bias. That’s what concerns Anjan Chatterjee, a neuroscientist who specializes in neuroesthetics, the study of what our brains find pleasing. He has found that, relying on baked-in prejudices, we often quickly infer character just from seeing a person’s face. In a paper slated for publication in Psychology of Aesthetics, Creativity, and the Arts, Chatterjee reports that a person’s appearance — and our interpretation of that appearance — can have broad ramifications in professional and personal settings. This conclusion has serious implications for artificial intelligence.
“We need to distinguish between classification and evaluation,” he says. “Classification would be, for instance, using it for identification purposes like fingerprint recognition. . . which was once a privacy concern but seems to have largely faded away. Using the technology for evaluation would include discerning someone’s sexual orientation or for medical diagnostics.” The latter raises serious ethical questions, he says. One day, for example, health insurance companies could use this information to adjust premiums based on a predisposition to a condition.
As the media frenzy around Kosinski’s work has died down over the last few weeks, he is gearing up next to explore whether the same technology can predict political preferences based on facial characteristics. But wouldn’t this just aggravate concerns about discrimination and privacy violations?
“I don’t think so,” he says. “This is the same argument made against our other study.” He then reveals his true goal: “In the long term, instead of fighting technology, which is just providing us with more accurate information, we need solutions to the consequences of having that information. . . like more tolerance and more equality in society,” he says. “The sooner we get down to fixing those things, the better we’ll be able to protect people from privacy or discrimination issues.”
In other words, instead of raging against the facial-recognition machines, we might try to sort through our inherent human biases instead. That’s a much more complex problem that no known algorithm can solve.
**Originally published in the Boston Globe**
When Miguel Roger began chemotherapy for chronic lymphocytic leukemia last summer, he didn’t realize the challenges he would face with food.
“Once treatment started, I noticed a change in my appetite, and a lack of energy,” said the 65-year-old retired engineer.
His wife Jenny, 61, became his primary caregiver, and found it challenging navigating all the nutrition advice from books, their doctor, and the hospital nutrition centre.
“I once cooked him calf liver to help with his anemia,” she said, “I read it in a book, but when I spoke to Miguel’s doctor, we were told it wouldn’t help, since the anemia was not related to nutrition, but to the cancer itself and the chemotherapy.”
Nutrition is an under-recognized challenge for many cancer patients. And fad diets can cause unnecessary weight loss, disrupt treatment, and sometimes make outcomes worse.
Many patients struggle with navigating the “cancer-specific” dietary information found in popular books, blogs, and websites. A British study released last month found caregivers and patients were concerned about the lack of accurate and clear information — something Canadian health providers are keen to provide.
It’s easy for misconceptions to spread through websites, nutrition bloggers, books, and word-of-mouth.
“In clinic, I once overheard a woman saying how she was getting mega-doses of vitamin C, rose hip tea, bee pollen and antioxidants,” said Jenny Roger. “But I heard the dietitian advise that those things may not be regulated and could be contraindicated during chemotherapy.”
This is a familiar story to many cancer specialists and dietitians, including Thomas Jagoe, director of the McGill Cancer Nutrition Rehabilitation Program in Montreal.
One of his challenges is dealing with diet trends that conflict with what a patient’s oncologist advises. One trend is “short-term fasting” before chemotherapy.
“This is a hot topic of research but at this time the evidence doesn’t support that a patient who is already losing weight starve themselves for a few days,” Jagoe said.
In Halifax, it was an open line of communication that helped Stacey Sheppard, a dietitian with the Nova Scotia Health Authority, identify the real reason behind a patient’s issue.
“One patient with nasal cancer got advice from a holistic nutritionist to omit gluten. When we got to the bottom of the issue we realized that they actually had issues with swallowing crackers — so it was a swallowing issue, not a gluten issue,” she said.
But patients keep looking for answers outside the system. And it’s all about control, says Jonathan di Tomasso, a nutritionist who works with the cancer rehabilitation program at McGill.
“People often lose control over many aspects of their life when they are diagnosed with cancer. Food is something they can control, but the roar of misinformation out there is deafening,” he said.
Toronto-based naturopath Daniel Lander, who has an undergraduate degree in nutritional science, works closely with physicians to offer evidence-based nutrition advice.
“Patients are generally relieved when I tell them they don’t have to follow those strict diets, and I focus on making sure they are getting enough calories and important macronutrients,” Lander said.
He advises a Mediterranean-style plant-based approach that has lean-protein sources, lower animal products and lots of fruits and vegetables and whole grains.
“It’s nothing too exciting or flashy but from the science, that’s the best we can tell people to do,” he said.
In terms of good online sources of information, Daniela Fierini, a registered dietitian at the Princess Margaret Hospital, recommends the American Institute for Cancer Research, BC Cancer Agency and Nourish Online, but still cautions against the “one size fits all” model.
Due to a good response to chemotherapy and radiation, Roger’s cancer has been in remission for the last month.
“Now my appetite’s normal. I lost around 10 pounds at the start of the treatment but I think I have gained it all back … my energy level is fine and I’m no longer swollen,” he said.
The Rogers were cautious about following popular cancer diet trends and maintained open communication with their doctor.
“You can get caught up with reading things on the Internet and I think everyone should be working with their doctor. People need to have a bond of trust with their doctor. Some people don’t, and so they look elsewhere, which can sometimes be overwhelming and can cause more harm than it helps,” said Jenny Roger.
[by Amitha Kalaichandran and Shuang Shan] **Originally published in the Canadian Press/Toronto Star**