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**
After Daryl Terry was admitted to hospital last October for a kidney infection, the 80-year-old’s condition deteriorated quickly. She was soon moved to the intensive care unit at St. Joseph’s Hospital in Hamilton, Ont.
With a poor prognosis, it seemed she would most likely die in the ICU.
It all came as a shock to family and friends, says her daughter, Barbara Terry, and became particularly difficult when the once-vivacious Daryl lost consciousness and was unable to respond.
But what came next was a surprise of a different kind for the family.
Medical staff gave the family the opportunity to participate in a project created by a McMaster University doctor that aims to humanize the grieving process for families and their health-care providers.
The Word Cloud Project helps families create collages of words and memories describing their dying family member.
“A few days before my mother passed away, a doctor came in to ask if we wanted to create a word cloud. The team showed us samples of previous word clouds, and I thought: ‘What a nice memento,’ ” Terry said.
The Word Cloud Project emphasizes storytelling and engagement between the health-care provider and the patient.
Connections with loved ones
The Word Cloud project was outlined in a recent paper in the British Medical Journal. In that paper, families who took part in the project describe how creating a word cloud improved connections with the loved one — even after death — by helping the family reflect on the unique characteristics of the dying relative.
The technique of eliciting words was also compared to a form of grief therapy.
Terry believes the word cloud helped members of her family better process her mother’s death.
“It was a sad time, as my mother had such an impact on those around her, but while we were discussing the word cloud, there were laughs as well as tears as we shared these memories and unique moments,” Terry said.
Daryl enjoyed Coca-Cola, was known for her vibrant red hair and was called “Mrs. T” by many who knew her. As such, “Coca-Cola,” “Red” and “Mrs. T” made it onto the word cloud, as did many other descriptions.
Terry soon realized that her word cloud would take on a much bigger role than just being a keepsake.
“What surprised me most was that we ended up making lots of copies of it and even placed it on the casket during my mother’s visitation, which really brought another unique element to the service,” Terry said.
The Three Wishes Project, the umbrella initiative that includes the Word Cloud Project, was created in January 2013 and is the brainchild of Dr. Deborah Cook.
Cook, a Hamilton-based ICU physician and professor of medicine at McMaster University, was inspired to create the project as a unique way to help families process the death of a loved one — something she has seen time and time again during her 25 years of practice.
“I’ve always had a passion in clinical practice for end-of-life care, and I really wanted to make a difference. I had done some research on end-of-life care in ICU and felt there was something missing today, which is the humanism in medicine,” Cook says.
Helping families
Through the project, a doctor or nurse elicits at least three wishes from patients, family members or other health providers caring for those patients.
The wishes are classified into five categories: humanizing the environment, tributes, family reconnections, observances and paying it forward. The word cloud falls under several of those categories.
More than 42 per cent of patients and families who took part in the broader Three Wishes Project from January 2013 to November 2014 chose the word cloud as one of their wishes.
Meredith Vanstone, co-author on the BMJ study of the project and an assistant professor in the department of health research methods, evidence and impact at McMaster, believes the Word Cloud Project can also help prevent burnout among health-care providers in the ICU.
“Witnessing a patient die in the ICU can be a difficult experience for health-care providers, too…. It’s a specialty known to have lots of burnout, which is why finding a way to look at the impact of this project on clinicians, which we did in this project, can be important,” Vanstone says.
Julie DeVries, one of the registered nurses who took care of Daryl during her last days of life, had recently moved from working on a general ward to the ICU.
“The word cloud is my favourite part of [the Three Wishes Project], and to see the impact on the Terry family was remarkable,” she said.
“It really changes the atmosphere of the room, and as someone who was used to working on a ward where I knew my patients, it’s made a difference,” she says. “The ICU can feel more mechanical as many of our patients are unconscious. The word cloud added that human element so I could feel like I knew them as a person.”
Effective communication
Cook believes that initiatives like the word cloud can help a new generation of physicians communicate effectively with dying patients and their families.
Her research has shown that trainees value approaches that humanize the process of dying. In a study about the broader Three Wishes Project, she found that the project reframes death and provides a unique experience with end-of-life care.
A lot of people have said it reminds them of why they went into health care and that it re-engages the human aspect of medicine, which is often forgotten in the data-driven, fast-paced, technology-focused hospital setting,” Cook says.
Research indicates that most medical residents have lacked adequate training in end-of-life care.
Dr. Paul Kalanithi, a Stanford University neurosurgeon who died of lung cancer at age 37, wrote a book, When Breath Becomes Air, that was published posthumously and explored how a physician understands death through his own reflective experience.
Dr. Lucy Kalanithi, an internal medicine doctor at Stanford, says the way medical trainees are taught about end-of-life care is changing from purely classroom learning to humanistic learning at the bedside. (Stanford Med X 2016)
His wife, Dr. Lucy Kalanithi, an internal medicine doctor at Stanford, says the way medical trainees are taught about end-of-life care is undergoing a shift from purely classroom learning to humanistic learning at the bedside, and that approaches like the word cloud play a key role for patients, their families and providers — including medical trainees.
“There is so much about how medical students and trainees learn about death that can be revisited,” she says.
“For Paul, writing was a big part of how he came to terms with his own death. It also played a huge role in how I processed the end of his life, and because of [his reflections], his health providers came to know him in a different way — even after his death.”
Growing interest
The Three Wishes Project in general, and the Word Cloud Project specifically, have since expanded to include Vancouver General Hospital and St. Michael’s Hospital in Toronto.
Cook has received other expressions of interest and inquiries from hospitals across North America, and hopes to expand the initiative throughout Canada.
Barbara Terry is pleased to hear of that potential growth.
Six months after her mother’s death, Daryl’s word cloud hangs prominently in Terry’s dining room in downtown Hamilton. She hopes other families can benefit in the same way the project has helped her family process the end of Daryl’s life.
“Though I initially thought it was meant to be a nice keepsake, I now see how it was more than that,” she says.
“It was a comfortable and naturally non-intrusive way to share memories and … strengthen those memories even as she was no longer with us.”
**Originally published on CBC.ca**
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**
When pain researcher Diane Gromala recounts how she started in the field of virtual reality, she seems reflective.
She had been researching virtual reality for pain since the early 1990s, but her shift to focusing on how virtual reality could be used for chronic pain management began in 1999, when her own chronic pain became worse. Prior to that, her focus was on VR as entertainment.
Gromala, 56, was diagnosed with chronic pain in 1984, but the left-sided pain that extended from her lower stomach to her left leg worsened over the next 15 years.
“Taking care of my chronic pain became a full-time job. So at some point I had to make a choice — either stop working or charge full force ahead by making it a motivation for my research. You can guess what I chose,” she said.
Now she’s finding that immersive VR technology may offer another option for chronic pain, which affects at least one in five Canadians, according to a 2011 University of Alberta study.
“We know that there is some evidence supporting immersive VR for acute pain, so it’s reasonable to look into how it could help patients that suffer from chronic pain.”
Gromala has a PhD in human computer interaction and holds the Canada Research Chair in Computational Technologies for Transforming Pain. She also directs the pain studies lab and the Chronic Pain Research Institute at Simon Fraser University in Burnaby, B.C.
Using VR to relieve or treat acute pain has been done for a while.
In the 1990s, researcher Hunter Hoffman conducted one of the earliest studies looking at VR for pain relief in the University of Wisconsin human interface technology lab. His initial focus was burn victims.
Movement and exercise
Since then, the field has expanded. Gromala’s lab focuses on bringing evidence-based therapies that work specifically for chronic pain, such as mindfulness-based stress reduction. They have published studies on their virtual meditative walk to guide and relax patients.
Movement and exercise are a key part of chronic pain management in general. But for many patients, it can be too difficult.
“Through VR we can help create an environment where, with a VR headset, they can feel like they are walking through a forest, all while hearing a guided walking meditation,” Gromala said.
The team also designed a meditation chamber — where a person lies in the enclosed space, breathing becomes more relaxed and a jellyfish viewed through VR dissolves.
Each experiment gives real-time feedback to the patient through objective measures of pain such as skin temperature and heart rate. For instance, while feeling pain, skin surface temperature and heart rate can increase.
While pain medications can be important, chronic pain treatment should also address lifestyle aspects, says Neil Jamensky, a Toronto anesthesiologist and chronic pain specialist.
“Physical rehabilitation therapy, psychological support and optimizing things like nutrition, exercise, sleep and relaxation practices all play key roles in chronic pain management,” he said.
Going global
Other researchers like Sweden’s Dr. Max Ortiz-Catalan from Chalmers University of Technology have looked at virtual and augmented reality for phantom limb pain — the particularly challenging syndrome among amputees who experience pain in a limb that is not physically there.
In his study, published in The Lancet in December 2016, Ortiz-Catalan demonstrated a 47 per cent reduction in symptoms among VR participants.
He believes the reason behind it is a “retraining” of the brain, where pathways in the brain effectively re-route themselves to focus more on movement, for instance.
“We demonstrated that if an amputee can see and manipulate a ‘virtual’ limb — which is projected over their limb stump — in space, over time, the brain retrains these areas.
“Through this retraining, the brain reorganizes itself to focus on motor control and less on pain firing,” said Ortiz-Catalan.
With only 14 patients, this was a pilot study, but he plans to expand the work into a multi-centre, multi-country study later this year. The University of New Brunswick is one of the planned study sites.
There’s an app for this
Others in the United States have published their own findings of VR for chronic pain.
Last month, Ted Jones and colleagues from Knoxville released results of their pilot study of 30 chronic pain patients who were offered five-minute sessions using a VR application called “Cool!” — an immersive VR program administered through a computer and viewed through a head-mounted device.
All reported a decrease in pain while using the app — some decreased by 60 per cent — and post-session pain decreased by 33 per cent. The findings were presented in the journal PLoS.
“What was interesting to observe was that the pain decreased for six to 48 hours post-VR experience. It’s not as long as we would like, but does illustrate that relief can be sustained over some period of time,” Jones said.
His team will be expanding the research this year and will also look at how VR can help with the challenging mental health side-effects of chronic pain.
Next steps
Jamensky points out while VR could be a promising treatment one day, one challenge with clinical trials is the dependence on looking at pain scores when assessing the effectiveness of VR. This may overshadow individual patient goals.
For instance, while the ability to decrease any individual’s pain score from a “seven out of 10” to a “three out of 10” can be challenging, improving functionality and quality of life can often be more valuable to the patient.
“A pain score may not always be the best way to assess treatment success, since the therapeutic goal may not be to eliminate pain or improve this score, but to ensure better sleep, better mobility, improved mood or even an ability to return to work,” he said.
VR as a technology for chronic pain management is in its infancy. Gromala notes that further research, in addition to standardizing the VR delivery devices, is needed before it becomes a standard of care. And future studies must include practical outcomes.
“It is important to realize that the ‘pain’ of chronic pain may never go away, and that ultimately the individual must learn to deal with the pain so that they can function better,” Jamensky said.
Gromala agrees.
For her, developing an awareness for how sleep, mood and exercise affect her own pain experience has made a huge difference.
In fact, it has motivated her to continue both advocating for chronic pain patients and to partner with clinical pain specialists on research.
” ‘Taking care of yourself’ means a different thing for chronic pain sufferers. It’s much tougher,” Gromala said.
“So as researchers we have a big task ahead of us, and sometimes it means exploring whether out-of-the-box methods like VR can help.”
**Originally published on CBC.ca**
Terri Peters is an architect and researcher whose interdisciplinary work maps new trajectories of ecological design through contemporary practice, academic research and pop culture. She is an expert in sustainable housing and her research focuses on the architectural and social implications of the built environment, with a focus on more holistic qualitative parameters and wellbeing. She has published more than 20 peer reviewed journal and conference papers on sustainable housing and the impact and evaluation of daylight in homes. She is the editor of “Design for Health: Sustainable Approaches to Therapeutic Architecture” Architectural Design, 2017 and author of “Computing the Environment: Digital Design Tools for the Simulation and Visualisation of Sustainable Architecture” John Wiley and Sons 2018 which looks at how environmental data can be feedback into design process. She has a global perspective, having lived and worked in Vancouver, Tokyo, Paris, and London, and Copenhagen which was her adopted home for seven years. After 12 years abroad she is currently back in her native Canada, as an Assistant Professor at Ryerson University investigating the intersections of building science, environmental design, and wellbeing.
1.What prompted you to focus on healthcare architecture/design?
During my PhD work, which was focused on social housing I realized that the aspect of ‘people’ in that housing was missing, specifically the social impact of buildings. We know the buildings we spend time in, and our surroundings, greatly impact our wellbeing, but how does this become part of how we work? We need to be able to back up our observations and claims as designers and I think the new-ish movement towards evidence-based design, where design decisions are based on more than a designer’s intuition and experience, but also on results and interpretations of scientific evidence, can help improve design.
On a personal note, growing up in Canada and then living in bigger cities like London, where I did my professional degrees, and then in Copenhagen where I did my PhD, these places can be seen as quite dark, dreary places but I loved them. I always say maybe this is why I study daylight, because I appreciate every drop of it! In Copenhagen our apartments had lots of natural light and natural ventilation, it really shaped my thinking of how positive and life affirming a home can be. There’s this concept in Danish of hygge, or contentment, a cosy feeling. Another concept in Swedish is lagom which means something like “just enough is enough.” these are important concept in life to me and I lived and experienced them in my time in Denmark and they continue with me now.
So with all of that together, I realized that if we designed spaces in hospitals and other settings to be intentionally mood enhancing, that could make us all feel better.
2.Why is design important to our well-being?
When we design a building, we know that the decisions we make, however small, impact the moods, ideas and wellbeing of people using the spaces. Prioritizing daylight, fresh air, variety of spaces and environments with views to nature are some of the ways we address this depending on numerous other variables like site and program. We know that these decisions about building form, materials, adjacencies and sequence of spaces, and other variables change our perceptions of spaces and places and help shape our interactions with others.
Design, simply put, impacts how we feel, and not just in health care environments, but in our day to day experience in our homes and where we work. According to the World Health Organization, depression is the greatest cause of disability worldwide, and architects have a role to play in making spaces that do more than satisfy program, budget and site, but that make us feel better. In architecture schools, students learn about building performance and aspects of sustainable design, but rarely are methods, metrics or examples of health promotion or spaces that encourage positive social interactions explored in any depth. There is a wealth of knowledge in allied fields such as environmental psychology, and published studies in areas such as public health and sociology that can be tapped into to enrich the architecture curriculum. The increased focus in schools on environmental performance of buildings must be paired with understanding trade-offs and co-benefits for human performance and wellbeing – after all, buildings are for people.
3.You had an interesting personal brush with the healthcare system in two different countries. What was that like?
I had my two children in Copenhagen at Rigshospitalet, the Royal Hospital. It was built in the 1970s, but had windows that open, large rooms, and lots of daylight that enters into the lobby and patient rooms. I am really sensitive to my environment and I found that the quality of that room impacted my mood and experience.
And it was a major contrast with being in a Canadian hospital which wasn’t designed with these well-being components in mind. I broke my elbow last winter and was forced to wait in a place that had a low ceiling, was crowded, no fresh air. I actually felt sicker! And to top it off it was hard to find where I needed to go – I spent a lot of unnecessary time just navigating: it wasn’t designed with ease. In Denmark, the culture is built around design. The way people speak about it and appreciate it is really unique.
4.How did this experience impact your work as an architect and architecture professor now?
I have the challenge of teaching 1st year students what sustainability is, when often the work-life balance of many architecture students is poor. We hear that many of them are very stressed and finding it hard to thrive. We often discuss the power of building design as health promotion tools.
Architecture is unique in that you experience it whether you want to or not: the impact the buildings have on us is so extreme. When it comes to environmental psychology, which links to designing for health, we know that people have a natural inclination towards nature, whether it’s the savannah or long views. The biophilia hypothesis (biophilic design) specifically describes this affinity to nature, daylight, natural materials.
Salutogenic design is another school of thought, which keeps stress reduction at the core. Earlier this year I became “WELL® Certified,” which is a new modality that evaluates qualitative and quantitative biophilia as it relates to health promotion. They measure things that are really exciting, because it’s centered around how people respond to being in a building. There’s a huge emphasis on daylight and nutrition, fitness, and well-being. For instance, they measure daylight differently. Traditionally in architecture we usually measure how much of the building’s floorplate is well lit without needing to turn on the light, its called spatial daylight autonomy and it means that area doesn’t need artificial light 50% of the time. The idea is related to productivity. The Well® Standard measures “equivalent melanopic lux,” which is a fancy way of describing the impact of light on the physiology of body, so for instance the impact on alertness, and sleep.
In my courses I describe a concept I coined called “superarchitecture,” which means buildings that do more than minimize the impact on the environment but that exploit and maximize the synergies and benefits to people: everything from building strategies like green roofs, daylight, fresh air and natural ventilation, shading where appropriate, outdoor spaces all these strategies that we know improve the environmental performance but that really also benefit our quality of life in tangible ways.
5.What does thriving mean to you?
Thriving is having time and energy to purposefully devote yourself to what you want to do. Technology can play a role in that, not only in making us feel more connected to each other, but by helping us make better decisions about what we want to do. It also involves how our environments help bolster our ‘emergency reserves’ to handle the unexpected, a protective buffer in other words. Last, when I think of thriving I think of resilience. There’s an emerging interest in architectural research and practice around building resilience and passive survivability. Much of how we think of the resilience of buildings may be applied to people as well. Daylight and views to the outside are big ones – we need these to feel at ease and to have the capacity to deal with disturbance and change. The current thinking around building resilience in building science and architecture is too focused on how buildings would survive in extreme weather or in an earthquake – what about us? How can our buildings help us survive and bounce back?
6.What are you most looking forward to with health design in general?
Looking forward to more interdisciplinary studies – for instance working with more healthcare professionals and building partnerships. I’ve been collaborating with psychologists regarding concepts of resilience in architecture and environmental psychology, which is undergoing a resurgence right now. I’m also excited about how we apply data, specifically how we can visualize the results of simulations, and how people can interact with visualizations and change our behavior to do more of what we want to.
I go to lots of industry meetings and workshops to understand what the potentials are with data and how they can benefit people.
“Bring yourself back to your awareness,” said Sara Auster, a self-proclaimed sound healer, after 45 minutes in a ballroom at a hotel in Chicago where she created vibrations using crystal bowls and tuning forks as well as a traditional Indian accordion, known as a shruti box. Seventy-five people got up like a gaggle of toddlers being shaken from a nap.
The session, which cost $30, and was like many popping up in churches, community centers and even some prisons and hospitals. The goal, practitioners say, is to use sound to tackle individual and collective anxiety, depression, insomnia and more.
Recently, musicians like Erykah Badu and the Icelandic band Sigur Ros have also dipped into sound healing.
Over in the tech world, mindfulness is deeply in vogue. Jack Dorsey, the chief executive of Twitter, swears by meditation. Since 2016, Ms. Auster, 40, has been invited as well to perform for various Google company initiatives. This past April, Adrian DiMatteo, a musician in Brooklyn who has a degree in jazz performance, led a sound bath in the neighborhood of Greenpoint for leaders at Instagram. (“They approached us to do a corporate bonding event, as they’re moving towards doing more events without alcohol,” Mr. DiMatteo said. “They had lots of questions about the instruments and the bowls.”)
Some health facilities have taken note as well. Ms. Auster has performed for Harlem House Clubhouse, an outpatient psychiatric rehabilitation program at Harlem Hospital in New York. Darren Austin Hall, a ceremonial musician and sound healer in Toronto, has performed in the atrium of Toronto General Hospital with a Canadian organization called Music Can Heal.
The Children’s Hospital of Philadelphia has also discussed incorporating sound baths. Mr. DiMatteo has offered them in the waiting area at NYU Langone through a program called Music That Heals, as well as at Coney Island Hospital and “about a dozen others,” he said.
Diane Mandle, who has offered sound healing in Encinitas, Calif., for 19 years, said: “It’s not curing, it’s healing.” She has also provided sound sessions in an oncology unit at Sharp Memorial Hospital in San Diego, as well as at a workshop for inmates at the Vista Detention Center.
“Healing is an ongoing process that contributes to a better sense of well-being,” Ms. Mandle said.
What are sound baths?
Sound baths are an experience in which a group of people gather, often while lying on a mat, to listen to sounds produced through various instruments. There is no licensing procedure for leading sound baths, and though Ms. Auster wouldn’t say where she received her training, her music background and meditation training are strong influences.
For centuries, various cultures, including my own, South Asian, have used sound as a part of religious ceremonies and prayer, with one goal being to promote and facilitate meditation. In that sense, it’s not terribly different from singing hymns in a church. Most religions and cultures use music and sound for spiritual reasons.
But what about the promise of healing? After all, the use of sound is advertised as an activity that can do many things, including “realigning your chakras” and “mind expansion.”
“Personally I have an issue with the word ‘healer,’ which is why I turn down a lot of wellness events,” Ms. Auster said. “There are all sorts of expectations with that label, and I don’t want to be seen as some magical guru person or for people to assume they could not possibly have an understanding of the experience.”
Like other forms of music, sound baths bring people together, but with an added meditative element. Anaïs Maviel, a musician in New York, said that she is often asked to perform for grass-roots organizations as part of “community-building” efforts.
Does sound have an effect on our health?
One way sound is related to health is through noise pollution: traffic noise, planes flying overhead, loud concerts. The World Health Organization lists noise pollution as an increasing threat to human health, and recently set limits on environmental noise.
This may also explain the boom in A.S.M.R. — soothing sounds that, like sound baths, aim to address stress and anxiety. A.S.M.R. has become an internet phenomenon, particularly on platforms like YouTube.
Sound, in the form of music, has been used for various conditions, including dementia. As Oliver Sacks wrote in his book “Musicophilia,” a variety of neurological conditions including symptoms of dementia and psychiatric conditions like depression and schizophrenia may also benefit from music.
But where is the evidence for sound baths? It’s unclear when “sound healing” was first used. However, medicine has used the concept for years specifically for acoustic therapy for tinnitus, a condition that involves hearing unwanted noise without a clear stimulus.
With tinnitus, essentially, the brain perceives sound as entering the ear, even though there is no sound. It is similar to phantom pain in that regard: a situation in which there is a misperception that can cause immense grief.
Often described as “acoustic therapy,” sound healing was listed as an appropriate treatment in clinical practice guidelines. But this therapy involves neither bowls nor chimes. It is typically a form of low-frequency white noise played through a hearing aid or through an app.
A 2013 study of tinnitus, led by David Baguley, a professor of hearing sciences at the University of Nottingham, listed acoustic therapy as one of several interventions. However, in December 2018 a review of existing studies found no evidence of using sound versus placebo for tinnitus.
“Well, the absence of evidence doesn’t mean absence of benefit,” Dr. Baguley said. He also noted that some patients choose calming nature or ocean sounds as opposed to white noise, which could overlap with the suggested benefits of sound baths.
“It’s more than just a distracting noise,” Dr. Baguley said. “We know that sound has a massive influence on how the brain is organized.”
So, do sound baths actually heal?
A 2014 study found that for patients being weaned off mechanical ventilation, providing them with sounds of nature significantly reduced agitation and anxiety, as measured through heart rate, expressions of pain and blood pressure, when compared with patients who did not listen to these sounds.
More recently, a research psychologist reported that singing bowl sound meditation was helpful in reducing tension, depression symptoms, fatigue and anger in a group of 62 adults.
So far, the evidence for sound healing is limited, and is aligned with what we know about the effects of calming music and the benefits of meditation.
Ms. Auster also believes that one of the biggest benefits of sound baths is that they facilitate community.
“It’s people coming together to release and let go, but in the company of others around them,” she said. “If meditation is taking the stairs, a sound bath is taking the elevator.”
**Originally published in the New York Times**