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My plea to corporate America to help us stop the spread of COVID-19

My plea to corporate America to help us stop the spread of COVID-19

Some of America’s biggest companies should consider leveraging their logistical capabilities—from using drive-thru windows for screening to turning megastores into diagnostic and treatment centers—as part of their corporate social responsibility, during these dire times.

Dear CEOs of McDonalds, Apple, Nike, and Marriott:

As you probably know, the success of both China and South Korea in decreasing the number of new cases of COVID-19 required both social distancing but also widespread testing and isolation of confirmed cases away from their homes. In other instances, testing even more aggressively made a big difference, and the World Health Organization now strongly recommends expanding COVID19 screening as well as isolation. Italy may have waited too long to implement crucial measures and North America has lagged behind for some time: estimates show that the US is now less than two weeks behind Italy and extremely behind in COVID-19 testing.

Testing is not widely available in the US and Canada, with the spread of misinformation leading symptomatic people to head to their local hospital or family doctor to try to get tested (with limited success while overburdening the system). It’s even more dire knowing that, in New York City for instance, an estimated 80% of ICU beds may already be occupied.

As powerful corporations, I hope you consider leveraging your own logistical capabilities, as part of your corporate social responsibility, during these very dire times—particularly in hotspots like Seattle, San Francisco, Toronto, Vancouver, and New York City. Here are some suggestions for what you can do during these perilous times.

Over the past week, McDonald’s announced they are closing seating. There are over 14,000 McDonald’s in the US alone, most of which have drive-thru windows.

So, my first idea involves pausing fast-food manufacturing for a few weeks in some of these outlets and using the existing drive-thru infrastructure for in-person fever screening (window 1) and COVID-9 throat swabs (window 2, if fever is present). These could be staffed with local nurses (wearing personal protective equipment, or PPE) who might typically work in community clinics that are currently closed. The brand recognition of McDonald’s means that most North Americans would easily be able to locate their nearest franchise. These would effectively serve as “Level 1” screening and diagnostic facilities for the next several weeks, with repeat testing weeks later to assess when an infection has cleared.

Second, over the past week, Apple (which has 272 stores in the US) and Nike (which has 350 stores) have closed their stores. Both of these stores, which maximize negative space and average several thousand square feet (so up to 4.5 million square feet of unused space), have design elements that may help reduce transmission during a pandemic. Some of these stores could be refashioned to serve as “Level 2” diagnostic and treatment centers, for more in-depth diagnoses and assessment of confirmed COVID-19–effectively “cohorting” positive cases together. Also, since both Nike and Apple have longstanding manufacturing relationships with China, with independent shipping and warehouse capabilities, they could help store any donated medical supplies from China and the country’s business leaders. Doctors who are not currently skilled to work in an emergency department or intensive care unit (for instance, most general practitioners) could administer the tests and basic treatment at these sites while wearing appropriate PPE, which offloads the burden on hospitals (which in turn serve as “Level 3” treatment sites for more advanced care). This could work better than military tents.

Third, China’s success in reducing transmission was in large part due to effectively quarantining cases away from their family (so as not to infect other family members). Yet building large quarantine centers, as China did, is not logistically feasible in North America. As such, now that there are fewer travelers, Marriott, which has wide reach across North America, could offer designated hotels in which to isolate the confirmed positives for 14 days to help induce “suppression.”

To be sure, North America should still follow the lead of both Britain and France by harnessing local manufacturing capabilities (which requires a Defense Protection Act), specifically for personal protective equipment like N95 masks, gloves, and gowns for first responders–this is even more crucial given the shortage. However, the bigger challenge will remain logistical. We may even end up having enough expensive equipment like ventilators (which may be used to serve multiple patients) if the milder cases are effectively identified and treated early.

I agree that “brands can’t save us” — but companies can leverage their strengths in collaboration with government. In fact, there have been countless examples from history of corporations pivoting to assist in public health challenges. The most prominent one that comes to mind is Coca-Cola. For decades, Coca-Cola offered its cold chain and other logistical capabilities to assist public health programs to deliver vaccines and antiretroviral medications, because donating money, simply put, just isn’t enough.

Through innovation, you’ve been able to place a thousand songs in our pockets, boast the largest market share of footwear, become the biggest hotel chain in the world, and serve as the most popular fast food company. Facilitating widespread screening, diagnostic testing, and facilitating the safe isolation and treatment of mild-moderate cases is not an impossible feat, especially if you work together with the healthcare system. Instead of allowing your brick-and-mortar businesses to sit idle please consider pivoting towards a solution in collaboration with government, as part of a coordinated and effective pandemic response.

Time is running out.

**Originally published in Fast Company on March 19 2020**

Interview Series: Bryant Terry

Interview Series: Bryant Terry

Bryant Terry is a James Beard Award-Winning chef, educator, and author renowned for his activism to create a healthy, just, and sustainable food system. Since 2015 he has been the Chef-in-Residence at the Museum of the African Diaspora (MoAD) in San Francisco where he creates public programming. Alice Waters has remarked, “Bryant Terry knows that good food should be an everyday right and not a privilege.” San Francisco Magazine included Bryant among 11 Smartest People in the Bay Area Food Scene, and Fast Company named him as one of 9 People Who Are Changing the Future of Food. Bryant’s fifth book, Vegetable Kingdom, will be published on February 2020. His last book, Afro-Vegan, was published in 2014 and was named one of the best cookbooks of 2014 by amazon.com and was nominated for an NAACP Award in the Outstanding Literary Work category. Bryant is also the author of the critically acclaimed Vegan Soul Kitchen: Fresh, Healthy, and Creative African-American Cuisine, which was named one of the best vegetarian/vegan cookbooks of the last 25 years by Cooking Light Magazine. www.bryant-terry.com

1. You had an interesting journey before being a food activist What prompted you to begin your work as a food activist?

Years ago, in high school, I first heard the rap song “Beef” by the hip hop group Boogie Down Productions. The lyrics discussed the impact of eating meat on human health, the environment, and animals. That was the first time I realized that I held all of these assumptions about how animals are treated in our food system, and I began eating less meat. I learned a lot about the many reasons to maintain a plant-based diet from lots of older Black vegetarians and vegans. While I was doing doctoral work at NYU in American history I learned about the “Survival Programs” created by the Black Panther Party in the 1960s that addressed the intersection of poverty, malnutrition, and institutional racism—mainly their grocery giveaways and Free breakfast for Children Programs. I realized that historically marginalized communities were still dealing with many of the same problems in regard to food access, so in 2001 I founded a non-profit called b-healthy to raise awareness among young people about the politics of food and give them the tools to improve access to nutritious foods in their communities.

2. How does that inform how you approach healthcare?

I think health ‘care’ system is a misnomer since it often doesn’t refer to caring for people’s health. Mostly we see this medical system responding to illness. I’d like to see a system that is putting more resources into giving patients tools to prevent chronic illnesses and truly “care” for themselves and their families.

3.You had an experience with being challenged with your well-being not that long ago? Can you share more about that?

While working on my last book a few years ago I had lots of time and space to disappear in the writing and recipe testing, which was really exciting. At that time I didn’t have kids and was newly married, and it was all about the hustle. Raising my children and working on my forthcoming book was hard because writing and testing was limited to weekends, holidays, and times when my kids were out of the house. So the struggle of balancing it all felt overwhelming. Things I used to rely on to stay balanced, like my meditation practice, fell away. So now that the book is done I’m preparing to spend the better part of 2020 touring by spending lots of time working on self-care.

4.What does thriving mean to you?

It means different things at different points in life. As a husband with two daughters now, thriving means taking care of my family, preparing my children for the future, and creating space for them to have an enjoyable childhood.

5.What are you most looking forward to in 2020?

I’m very excited about further inspiring people to work towards a more healthy, just, and sustainable food system.

Interview Series: Roger Holzberg

Roger Holzberg is the co-founder, along with Leonard Sender, MD, of Reimagine Well, a company that designs and builds immersive healing programs for hospitals and treatment centers. The Infusionarium™ platform empowers patients to receive treatment in the place they believe will best heal them, then empowers them with enhanced educational “Learn Guides” and a safe support community for their patient journey. He served as the first (consulting) Creative Director for the National Cancer Institute (NCI). The “evolution” of Cancer.gov, the NCI Facebook, Twitter, Mobile and YouTube channels are all projects that his creative team took from concept through launch. Previously, Roger spent 12 years as an award-winning Creative Director / Vice President at Walt Disney Imagineering where he had the opportunity to lead the creative development for a broad portfolio of projects ranging from PlayStation® games to theme park icons and multiple Disney World Celebrations; from mass audience interactive experiences and rides to the MMOG Virtual Magic Kingdom. In “classic media,” he has written and directed feature films and television, but is genuinely proud of researching and writing the IMAX film “The Living Sea” (Academy Award nomination for documentary). Roger is a father; a 15-year cancer survivor; and a competitive triathlete (3 events yearly), using the sport to raise research dollars for causes he supports.

1.What prompted you to start Reimagine Well?

Roger Holzberg

As a cancer survivor I had a firsthand look at how “unhealing” the patient experience was in the US. At the time I was diagnosed I was a Vice President and Creative Director at Walt Disney Imagineering. I put together a group of volunteers from Disney that were either cancer survivors or caregivers and we worked on projects that ranged from a support platform to contributing to the redesign of the lobby at Children’s Hospital Los Angeles, and then doing the “living with” stories for the launch of Livestrong.com and adapting a Disney attraction called “Turtle Talk with Crush” for use with pediatric patients at Children’s Hospital of Orange County. I was then recruited to be the first (consulting) creative director at the National Cancer Institute, redesigning Cancer.gov and taking the institute into social media and story telling. All of these experiences planted seeds in their own way for re-envisioning the healing environment.

2. You had an interesting journey as a Disney Imagineer, what was that like? And How does that inform how you approach healthcare?

Back in 1964 in Flushing Meadows New York, when I was eight years old, I attended the Worlds Fair and saw “Great Moments With Mr. Lincoln”, the first audio animatronic figure and nearly tore my dad’s jacket sleeve off when I asked ‘how did that happen?’ His response stuck with me: “A man named Walt Disney invented that.” That was the beginning, and since then I have been drawn to what’s known as “experience design” (as opposed to film and consumer product design). Experience design is so much more powerful when a medium is multi-dimensional. I ended up taking college courses in design and finishing up at the California Institute of Arts. In my early career in the entertainment industry I worked in special effects and production design, and wrote large format IMAX films. The educational expansion of the Imax films led to an opportunity to help build “Knowledge Adventure” and the “Jumpstart” brand. I was then recruited to Disney Interactive to be their first creative director. The Imagineering division of Disney recruited me to work on the Millennium Celebration and lead the creative teams on the 100 Years Of Magic project at all four Disneyworld theme parks. After 9/11 we saw a big retraction in vacation travel and I had the opportunity to build a team and lead a project called Virtual Magic Kingdom. This had 5 million children interacting with children in brick and mortar parks and sometimes during the experiences that followed. So the seed was planted around blending the things that hadn’t been done before. I spent a total of 15 years with Disney. Walt Disney coined the phrase the “architecture of reassurance.” Disney parks were designed to be a safe place for families to play. At Reimagine Well we try to create an ‘architecture of healing’, creating a safe and special place for patients and families to heal. So my 15 years at Disney informed what I did to create an emotionally engaging space for people to play. I realized the same tools could be used for patients and families to experience the patient journey.

3.You had a health scare of your own not that long ago. Can you share more about that?

Cancer has been a ribbon throughout my life, from losing one of my best friends as a child to pediatric cancer and losing my mom to cancer in my 20s. For me, as a competitive athlete I got to know my body really well, and in 2004 I began noticing that something subtle was off. I’d gained weight without changing my diet or exercise regimen, I hit an energy wall in the afternoons. On the anniversary of my mother’s death I remembered her saying ‘don’t pretend nothings wrong as that’s what I did.’ I spoke to my doctor, had an MRI of my neck, and it was clear that I had thyroid cancer. One in three American women and one in two men hear the words “you have cancer” during their lifetime, but in that moment the world becomes a rush of white noise. You see a physician across from you speaking a language you don’t understand. I call it the “terror moment.” When you’re in shock you don’t make the most rational decisions since you are operating out of fear. You’re staring your own mortality.

It wasn’t until I was undergoing radiation treatment when the healing environment aspect hit me. The walls in the hospital hadn’t been painted since 1980s and this was the most un-healing experience I could imagine. I came from a place where the architecture of reassurance is what we practiced. It didn’t even smell right! It hit me like a ton of bricks that the patient experience, even though I didn’t know that term yet, was something to be worked on.

4. What were the things that helped you get through the cancer diagnosis?

I told very few people about the diagnosis, and actually didn’t tell my kids until after the surgery, when the pathology results came back. I remember going online and seeing 70 million hits for my search — I was in overload!

But I spoke with a good friend of mine who was a cancer survivor who advised me to just focus on one thing at a time. Effectively, the patient journey has different phases, from diagnosis to treatment, then healing and well-being. So the biggest thing that helped was when I realized I only needed to focus on just one of those phases at a time, suddenly I could catch my breath again and look at phase relevant to me at that point was enormously helpful. This then informed our social platform for Reimagine Well, which helps patients set achievable health goals and use the wisdom of the healthcare community (which includes healthcare professionals) to navigate the patient journey..

5. What’s the most misunderstood aspect of cancer and dealing with a diagnosis/living with cancer?

There are a few things.

The first is that unless it’s critical, take the time to let yourself get the information you need. More often than not you have time before you need to jump into treatment. Take the time to find the right care team, do the research and get informed and get a second opinion.

The second myth is that all cancer treatments are the same: that’s not the case. A small community center may not include the clinical trials that may be available at a larger center. You owe it to yourself to do the research if your odds for survival are potentially better at a larger center.

The third is that clinical trials turn patients into guinea pigs. This is a big misunderstanding. Clinical trials often provide the best, most attentive, cutting edge clinical care someone can get, and if a clinician recommends a trial you qualify for, don’t be afraid to consider it.

The last is the role of diet and exercise. A healthy BMI can significantly reduce the chance of cancer recurrence and there are recommendations for 45-75minutes of exercise daily. Unfortunately very few doctors are trained in these lifestyle factors. Find a credentialed Registered Dietician to help you design the best program for you and your specific health goals and medical needs.

6. What does thriving mean to you?

Thriving in my new normal means having an emotional, spiritual, and physical health balance. Compared to 15 years ago, I can honestly say my work, family, and active lifestyle are so much better today than it was before my cancer diagnosis. I think it was because of my approach to the disease, my new career with Reimagine Well (which happens to be very rewarding) and adopting a healthy and active lifestyle. Thriving also involves having a supportive community, we hold each other accountable for our health goals as well as providing emotional support and friendship.

7.What are you most looking forward to with Reimagine Well and in general?

Right now I’m teaching a Healthcare by Design course at the California Institute of Arts. Last year we delivered a pilot project to Children’s Hospital Los Angeles and this year we will create a pilot program for the Henry Mayo Newhall Hospital in Valencia, so helping to educate and train the medical experience designers of tomorrow is super rewarding. At Reimagine Well we are launching a new experience design program, which involves reducing the need for excessive sedation in several pediatric medical centers, and using virtual reality as part of this program. With the proof of concept pilot program we were able to reduce the mean age of sedation from 10 to 3; a formal clinical study (with research ethics approval) is now underway with Nebraska Medicine on this. In 2020 we will also be expanding into pediatric behavioral programs, and adult oncology.

**Originally published on ThriveGlobal**

Resolving to Be Coached

Resolving to Be Coached

The secret to sticking with your resolutions may be having a coach to help strategize and cheer you on.

My teenage patient looked nervous as I reviewed her glucose readings from her glucometer and her glucose logbook, which people with diabetes use to track their blood-sugar test results. There were a lot of high levels — ranges in the 12’s and 14’s, when the goal was around 7 or 8. The peaks were mostly in the middle of the day and on weekends. (This was in Canada; blood glucose readings of 12 to 14 are equivalent to 216 to 250 mg/dL in the United States.)

“What do you usually eat at home?” I asked. She said that her mother was careful to make her a breakfast that balanced carbohydrates with protein. Her dinners were similar.

“What do you usually eat at lunch?” I asked. My patient started tearing up. She ate whatever her friends were eating in her high school’s cafeteria that day — like spaghetti, hamburgers or pizza, and something like a cupcake for dessert. This was probably what led to her readings being so high.

She had met with diabetes educators before, and she knew what uncontrolled glucose does to a person with diabetes, from speeding up nerve damage in the feet to hastening blood vessel damage in the back of the eyes and the kidneys, to increasing her risk of heart disease.

I knew she could have told me all of that, so lecturing her wasn’t going to help.

Instead my patient needed empathy and the tools to help her make healthier decisions, and part of that required understanding what was important to her, specifically “fitting in” with her friends in high school, the ones who didn’t have a chronic disease. It also would have involved helping her find the motivation within herself to make the change.

But my skill set for helping her was limited, especially on top of everything else I had to cover within our allotted time of 45 minutes.

Research suggests that behavioral and lifestyle factors are a big part of what contributes to chronic disease. In medical training, we learn a lot about the body and how to prevent and treat disease, but little about how we can motivate a patient to change old habits or even stick with a current management plan.

It struck me that what my patient really needed was a coach. At this time of year when many of us have made resolutions to get healthier, working with a health coach might be one way to reach those goals.

A health coach is someone trained in behavior change, who primarily uses an interview style called “motivational interviewing” to help patients see their ability to make change. While some may have clinical training in fields like nursing or medicine, they hail from a wide variety of disciplines or train in health coaching as a secondary career.

As a relatively young field, it’s still finding its footing — for instance, a systematic review found that the definitions of “health coaching” varied widely, though the authors recommended that health coaches take a patient-centered approach to help with goal setting while encouraging self-discovery and accountability.

The evidence that health coaching may spur general lifestyle changes is mounting. A 2018 study looked at clinical trials for coaching for nutrition and weight management and found that over 80 percent of these studies found improvement. And a 2017 study found that coaching can lead to increased physical activity in older adults. Studies suggest that health coaching may also provide benefits for conditions such as obesity and diabetes as well as attention deficit hyperactivity disorder, chronic pain, hypertension and high cholesterol. A recent review found that health coaching can improve quality of life and reduce hospital admissions among patients with chronic obstructive pulmonary disease, and it may help patients to become more engaged in the health care system.

It may even improve health outcomes through encouraging patient adherence to medication.

“Health coaching recognizes that we cannot help people by expecting them to act if that person is not ready to act,” said Leila Finn, a health coach based in Atlanta. “We help people take big goals and break them down into accessible, bite-size pieces — not by telling clients what to do but by helping clients figure out what will work for them.”

Health coaching gets to the heart of what providing good health care is about: acceptance, partnership, compassion, and helping patients feel respected and understood.

Though my clinical training is in pediatric medicine, inspired by what I had read, I recently completed a certificate in health coaching myself. The experience was eye-opening and humbling. I learned new ways of communicating with my patients, specifically ways to encourage them to see their own ability to make lifestyle changes while setting manageable goals. I also learned ways to cheer them on when they reach their goals, without shaming them if they relapse: Both pieces are critical to the process of making sustainable change.

While research is beginning to show the value of health coaching, the principles of communicating with the intent to inspire and motivate are transferable to all health professions — and could reap dividends if taught early on in the training of nursing students, medical students, pharmacy students, and other allied health professionals.

And when I think back to my teenage patient with diabetes, while I was empathetic, that was only half of the solution. The second half could have involved coaching her to see which small changes she could begin to make moving forward. I’m hoping that choosing my words more effectively, even within the pressures of time, may make all the difference for my other patients.

**Originally published in the New York Times**

Interview Series: Kashiwa Hang

Interview Series: Kashiwa Hang

Kashiwa Hang (real name: Iwao Mano) is a 38-year old handpan musician based in Tokyo. In 2016 he experienced what many of us in North America call “burnout,” except it’s arguably more difficult in Japan, where many companies expect their workers to work over 16-hour days. This is one major contributor to what’s known as ‘karoshi’ ((過労死) or ‘death due to overwork.’ Often on the Japanese subway/train I would notice men and women in suits, often late at night, sleeping on the train, clearly only just heading home after work. In my hotel I once saw someone in a suit, with a briefcase, sleeping in the lounge, possibly too tired to even check in after a late night at the office. A Japanese friend explained to me that it’s common for some workers to find a capsule hotel (inexpensive hostel-like accommodation) to sleep after a late night, and go back into the office the next day, and the sad thing is that very few talk about the burden of this ‘overwork culture’ openly, despite efforts by the Japanese government to institute workplace policies to combat it. Recently the Atlantic covered why it remains so challenging for young people in particular to speak out about depression in the workplace.

While in Japan as an Asia Pacific Media Fellow reporting on artificial intelligence and healthcare, I happened upon Kashiwa Hang performing on the sidewalk. I snapped a quick photo of his CD and promptly downloaded his album. A quick web search later on, in an effort to find more of his soothing music, led me to learn that his story was a truly remarkable one. We were able to find time to speak at a café in Tokyo, about what led him to leave a demanding but lucrative architecture position to become a musician full time. It turns out it was a decision he made for his well-being, and is hopeful that other young people in Japan may have the courage to place their health first as well.


1.Thank you so much for finding the time to share your journey. Why don’t we start at the beginning. What led you to your initial job in architecture?

Growing up I was always interested in computers, math and design. Architecture seemed like a natural fit, and I enjoyed my classes in architecture. I ended up working for a few different architecture firms – from large ones to smaller boutique firms. I enjoyed the variety.

2.While you were working at one firm in 2016, you experienced something challenging but transformative. Can you share this with our readers?

I had been working at a medium-sized architecture firm in Tokyo and, as one of the youngest architects there, was given a larger proportion of the tasks. The mentality here in Japan is “if you’re young and healthy, you can handle more work.” And I did handle it for a period of time, all in all about 10 years. But I was getting into the office by 7 or 8 am and staying well past midnight with not much time for breaks. I skipped lunch often. I was on my feet a lot, and always looking at a computer screen. It was cognitively demanding work as well, so over time my body and mind just became exhausted. I began feeling anxious, and would notice heart palpitations often. One day, while at a standing desk, working through a design, I just collapsed. I don’t remember all the details, but I was taken to a local hospital and the doctor told me I needed more rest. I didn’t have a diagnosis per se, but when I explained it to my boss, he didn’t understand. I had no choice but to go back to work the next day, and act as though nothing had happened. And so, not knowing what other options I had, I just did it. A few weeks later I was walking home from the train and saw a man playing the guitar on the street. The sound was so calming, so I stopped to listen for awhile. For the first time in a long time my heart felt happy, and I felt calm. In that moment I thought: why don’t I learn an instrument?

3. Do you think you were on your way to ‘karoshi?’

In a short answer: yes. There’s no doubt that would have happened had I not made a change.

4.Let’s talk about that change. Clearly you took that hospital visit seriously – you ended up picking a different instrument and leaving the industry of architecture all together. That sort of 180-degree shift career-wise, is not common in Japan is it?

That’s right. First I thought back to an instrument I really loved in high school – on a trip to Barcelona I had first heard about the handpan. The sound was beautiful, and I had learned that it was a relatively new instrument, having been invented around the year 2000 in Switzerland. But I couldn’t remember the name of the instrument! I ended up searching things like “UFO music pan” and finally found it, and the name, “handpan.” Then I searched online for classes, but couldn’t find any, and I couldn’t even buy one in Japan! So I found a company in Switzerland and ordered one directly. Then I began to teach myself through YouTube. Overtime, with practice, I travelled to France and learned directly from local artists there. My English improved as well, and I ended up finding a community to tour with. I recently completed a tour in Taiwan, and plan to go to Europe soon. In terms of your second observation, you’re right: freelancing of any kind isn’t common in Japan. There is real fear around financial stability and most people would rather have a steady job, even if they are overworked, compared to the uncertainty. At first my parents were very concerned, but now I perform (and get paid), and teach students, so I’m able to support myself.

5.That took a lot of courage. So what about architecture? Will you go back?

A lot of my friends say I’m brave. I just think I had not choice if I wanted to keep living and if I wanted to have a happy life. I don’t have plans to go back to architecture now. I enjoyed it, but the costs to my health, at least in Japan, were too large. I’m much happier as a musician. I’m more in control of my health, I sleep well, and overall feel calmer and more at peace.

6.What does thriving mean to you?

If you asked me that question in early 2016, I would have described the sense of feeling ‘rich’ financially, working hard, making lots of money, etc. Now I see it as richness of the heart and mind, along with having good friendships.

7.What are you most looking forward to with your music now?

I’m working on another album, and am teaching more. I hope to do another tour soon as well, and there are lots of opportunities to perform around Japan as well. But reminding myself that right now I’m living the dream. Thinking back to a few years ago, right now I’m so grateful to really be thriving.

Interview Series: Darren Sudman

Interview Series: Darren Sudman

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.

How word clouds offer solace to family members as a loved one dies

How word clouds offer solace to family members as a loved one dies

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**

Interview Series: Terri Peters

Interview Series: Terri Peters

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.

Interview Series: Nira Kehar

Interview Series: Nira Kehar

Nira Kehar is an award-winning chef trained in French cuisine. She is also self-trained in Ayurvedic principles, which she incorporates in her cooking.  For almost six years, Kehar ran the restaurant, Chez Nini, in Delhi, India, serving clients from around the world.  Married to a musician, Kehar now spends her time between New York City and Copenhagen. Her cookbook, Ojas, was released in 2018,  just months before a chilling diagnosis of breast cancer sent her life reeling. She spoke with me in July from St. Adolphe, Quebec where we cooked a meal of kitchari, salmon, and garlic scapes.

So  what are we making today?

We are making Kitchari, which is a slow cooked dish traditionally made of rice, lentils and spices. Kitchari in modern times is often associated with a bland porridge, that Indian moms give their children when they are ill or have a bad stomach, but historically it was known as a delicacy for the royal families. It is rich in nutrition and easy for your body to break down and digestion because of the longer cooking time. Kitchari can also be made with any variety of beans or grains and I also like to top it with either vegetables, all type of proteins and different nuts and seeds. Today we are making a red lentil and quinoa kitchari topped with garlic scapes and pan seared wild-caught salmon.

What drew you towards the culinary arts?

After a debilitating spinal injury I suffered at work, I was catapulted into a life-changing existential crisis. The 8-month recovery period was filled with contemplation and an eventual re-engineering of my life, which brought to light how much I really craved a more creative path for my career. Having been raised in a house where food was the currency for love, I naturally gravitated to the idea of cooking, flavors and feeding.

But your academic  background was somewhat untraditional.

I graduated university as a computer engineer, but after my injury, I went to ITHQ in Montreal to do their French culinary program. The prospect of cooking and living a life of creative expression was the most welcome and transformative experience of my life.

What is ayurvedic cooking?

From the young age of ten, I had always been very interested in Ayurveda and it’s very well known sister science, Yoga. This interest had actually stemmed from the book “Autobiography of a yogi” which I first read in an attempt to impress my mother, but it ended up being the equivalent to my “Harry Potter” as a child. This curiosity continued throughout my life and I found myself studying and practicing Ayurveda more than ever when I was cooking professionally. Ayurvedic cooking very organically became synonymous with how I expressed the flavors and compositions in my cuisine. I used the backbone of my Ayurvedic knowledge in order to nourish people instead of just feeding them. I tweaked recipes for the everyday foods people already enjoyed, to incorporate principles of eating for your body type and using herbs and spices for balance.

I think the trouble with many ways of cooking, especially when food comes into the picture in wellness discussions are all the trends out there. There are ‘blood type’ diets which have no scientific basis for instance.  But when you describe Ayurveda using broad strokes, it makes sense. A whole-foods approach. Many  people get turned off by the term ‘Ayurveda’ because it sounds different, even though the principles have been used for centuries.

Yes I definitely agree with you. We have been eating from the time we are born and will eat pretty much till the day we die. Unlike a lot of the habits and lifestyles that we hang on to and protect whether for cultural reasons or sentimental, I have found that people tend to be surprisingly ready to just completely change what and how they eat based on diets or fads. I find this extremely unhealthy and counter intuitive. Ayurveda on the other hand is fully based on balancing your individual body in an intuitive and gradual way. It’s about building your instincts about your own body type and then slowly making adjustments to strike the balance that nature has implicitly intended for you.

What does the title of your cookbook, “Ojas,” mean?

The closest translation is similar to what is termed “Chi” in Chinese medicine. Ojas is the most subtle bi-product of your digestion. Everything you eat, experience, feel and live all result in this vital energy, which is responsible for your being alive. It is the encapsulation of the “you are what you eat” idea. Eating not being limited to only food, but everything that is taken in by your perceptions and senses.

Interesting word. There are definitely people that seem brighter and more alive, and having healthy ways to deal with stress might be part of it. Perhaps children in general have lots of it. I’ve also seen photos of people who meditate regularly who just look less tense.

Ojas is also enhanced by mediation. A person with good or high Ojas has a bright energy and a glow. Good eating habits, stress managements, the right amount of sleep, loving relationships and an understanding on how to balance your unique body are all very good ways to manage your Ojas. I am determined to be part of the community that is bringing Ayurveda to the mainstream and in turn helping people improve their Ojas.

Shifting gears: What was it like owning a restaurant in India?

Owning my own restaurant was one of the most beautiful experiences of my life. I felt so privileged every day to have each and every customer walk in and allow me to feed them. With the incredibly steep learning curve, came a deep sense of responsibility on what I served these patrons. Where I sourced the ingredients, how I stored them and cooked them was of prime importance. Even more important was the well being and growth of the people who worked with me and put their entire vitality into the everyday running of the restaurant. What they put in would be what the customer would feel. Having a restaurant is famously known to be one of the toughest businesses in the world, and I would say that if you can do it in India you can really do anything. It is not a job for the faint hearted.

Lets talk about what happened in 2018. Your book just came out and you got some unexpected news. 

I was diagnosed with breast cancer in April, a month before I was meant to start the promotional tour for my book. The cancer was discovered completely by chance and my doctor truly saved my life, because of a nagging feeling she decided not to let go of.

Five surgeries, fertility treatments, chemotherapy and radiation are all done now, and I have been cancer free for 8 months. It was an indescribably challenging time and in many ways continues to be, but I do also think in has been a surreal sort of blessing. I can never un-know the value of being present and grateful to be alive.

I’m so glad you were able to move through that period, though I know you have to continue to be monitored. It’s also interesting that your doctor had a sense that something was wrong — I’ve written about clinical intuition in that regard, and it’s fascinating. Moving to food and cancer now — there is a lot of misinformation out there around the role of nutrition when it comes to cancer. How did you approach food during all of this?

There is definitely a lack of information and guidance from most doctors on the subject. I was astonished to be told I can eat and drink whatever I wanted and even that it was ok for me to drink wine. I chose to take guidance from my Chinese medicine doctor and Ayurvedic practitioners, to integrate the allopathic treatment with a holistic diet as well as a fasting protocol during chemotherapy. I am not qualified to know what would be best for any other cancer patient to do, but I would strongly suggest making all the efforts to find the right foods and guidance for your body during this very taxing treatment. Even if your medical doctor isn’t qualified in nutrition to give you the right guidance, it is imperative to figure it out with other holistic practitioners. One important thing I made sure to do was to consult with my doctor, about any supplements I was taking because they can severely interfere with your treatments.

The role of nutrition is an interesting area of research, and admittedly I’m reexamining some of my old beliefs about the role of food as we learn more about whether there is a role for intermittent fasting in general and various new protocols for cancer treatment that look at the role of nutrition. It’s a fascinating area to keep an eye on, and like with many areas of medicine, once more data comes in we’re able to re-orient how we approach care.  Was there anything else that helped you through this devasting period?

I went to a therapist through most of my treatment and continued for some months afterwards. Your life is turned upside down and it isn’t always possible for those around you to understand what you are going through. As physical as cancer and the treatments are, I experienced a deep sense of calm and vitality by using tools like therapy and transcendental meditation.

What does well-being and ‘Thriving’ mean to you?

Eating whole foods and lots of vegetables. Finding ways that you like to eat them and not falling into the pressures of all the overwhelming information coming our way from all directions. Finding whatever way to laugh everyday and be grateful for whatever it is you have. I write a gratitude journal daily and that really shifted my daily perspective. Also re-evaluating this expectation of constant happiness and instead being content with the little things in life. The second page of my book has the quote that I like to live and cook by, which is “More and more with less and less, until you can do everything with nothing.”

What are you most looking forward to now?

I am trying not to look forward but be in the now. I work everyday on my next book as well enjoy my good health and loving friends and family.

**Originally published in ThriveGlobal**

Interview: Jessica Harthcock

Interview: Jessica Harthcock

This is part of a series of interviews by physician and journalist, Dr. Amitha Kalaichandran, exploring purpose, resilience, healing, and brushes with the healthcare system by trailblazers in the health and wellness community.

 

Jessica Harthcock is the Co-Founder and Chief Executive Officer at Utilize Health, a neuro care solution that focuses on creating a better healthcare experience for patients with neurological conditions while delivering quality-driven medical cost savings for key stakeholders.  Astounded by how much of the work her family had to do on their own; Ms. Harthcock vowed to create a service that assists patients and caregivers in locating and obtaining optimal care while minimizing expenditures for individuals, families and payers. To learn more about Utilize Health visit utilizehealth.co. She spoke with me in July from Nashville Tennessee.

So what is Utilize Health, and who does it serve?

Utilize Health offers a neurological care solution to lower care costs for health plans while maximizing overall health for members. The end user of our program is the patient who has a severe neurological condition such as a stroke, spinal cord injury, brain injury, and other condition.

After my accident I spent years searching for highly specialized rehab treatments. I saw how disconnected and fragmented the healthcare system is for patients like myself and variable recovery for patients. Patients would reach out to me and ask for advice. As I saw this happen I knew there was a tremendous opportunity.

Tell me more about what happened on that fateful day while you were doing gymnastics.

It was 2004 and I was 17 practicing gymnastics in order to improve my springboard diving skills. I went to do a front double tuck with a layout twist. The last one involved going up in air; when I came down, I landed on my head. I heard a crunch and my body went numb. I had landed on my head which broke my neck as well. I was in a state of shock and couldn’t feel anything or speak. In that moment I thought about Christopher Reeves, that I would be paralyzed like him. I didn’t have sensation but I was fully conscious. Later on we found that a cyst formed around the spinal cord so it looked as though the spinal cord had herniated in the scan, which ultimately did most of the damage at T3. This accident left me to function as a T3 paraplegic.

And what was the healing process like?

It was long. I was in rehab for nearly 3 years with leg braces, electrical stimulation, at times someone  was holding on to me.  My foot first just advanced an inch. It slowly turned into an actual step. You’re shaking, your muscles are trying to function. It took me six years to walk completely unassisted. I eventually moved to having just one forearm crutch, and now I don’t need any assistance. I used gait training as well as biofeedback that was linked to the gait training. Gait training was harder to come by back then, but today it’s much more easily accessible.

What would most people be surprised to know about having that particular physical challenge? 

The biggest thing I see is how uneducated much of the public is when it comes to understanding physical differences. I always grew up conscious of people that had differences in their abilities. One of my cousins has cerebral palsy so she was in wheelchair since she was little. I never thought much of it, and my dad always talked about the ADA [American Disability Act] and how important that was, and how people with different abilities want the same things we all do.

Especially early on after my accident people would point and stare — a mother with her child in a stroller once pointed to me and said, ‘look she’s in a Stroller too.’

When I got my service dog I noticed how ignorant people were. I felt I needed to educate people about was service dogs could be used for and how mine help me. It was particularly tough when Ozzie and I would get kicked out of healthcare facilities and public spaces, even though it’s against federal law. So I to become my own advocate, and realized I needed to educate others on a larger scale so I started speaking at schools and local businesses.

There is a lot of misinformation out there around what works best for spinal cord injury. Are there any myths you would like to clear up?

The biggest misconception about spinal cord injuries and neurological conditions is that recovery is not possible. In the past 15-20 years research has advanced such that it IS possible. We now see patients make incredible strides in recovery, whether it’s regaining bowel, bladder control, whether it’s walking or sitting up and balancing again. We did believe 30 years ago that spinal cord injury meant someone would never walk again, but the fact that many patients are still told they will never recover and shouldn’t even try, and are sent home to live the rest of their life without hope doesn’t make sense to me. That’s where I get angry. I would like to see this addressed in the healthcare community. Conversations like, “this is what your prognosis is can be challenging, and this is what it can mean, but others have recovered even if we don’t fully understand why.” We still don’t know all the elements and facets and we’re at the tip of the iceberg. More research has to be done. At Utilize we’re collecting outcomes from every patient in the program, looking at countless factors: through social determinants, spiritual, and how it all plays a role in recovery. We get patients from all walks of life and we’re now looked at how we can use big data to tie it together.

Now that we talked about myths, what are some new and surprising areas of research spinal cord injury and the role of rehabilitation (as well as other components of treatment?)

The different simulators that they can implant in your spinal cord and brain are exciting. There’s some great work out of the Fraizer Rehab Institute in Kentucky for instance, led by Dr. Susan Harkema which holds a lot of promise. It complements other research, like gait training. There are also other, more controversial, research areas such as using stem cells in spinal cord injury, which will be an area to watch over the coming years.

Was there anything else that helped you, other than surgery and rehab wise through the healing process?

I separate healing into three areas: physical, emotional and spiritual. Physical healing for me involved rehab, exercise, nutrition, and rest. Emotional healing involved handling the traumatic injury, knowing I was going to be ok in the end and the stress aspect.  Spiritually I knew something terrible had happened, but had to find a bigger purpose for it. For anyone who believes in a higher power, they have to feel something greater. I know a lot of people might not feel this way, but for me, the emotional and spiritual healing aspects were things I had to consciously focus on, to remind me that I couldn’t let this accident get the best of me. As well, I needed to surround myself with supportive people. I was lucky to have an entire army of people and support and helped me heal in really beautiful ways. My family was and still is today my rock. 

Returning back to Utilize, what has the response been?

The response has been overwhelmingly positive. We have high engagement results and our health plan partners have had fantastic results. We post great outcomes and consistently show lower costs of care. If any business can create a win-win for everyone, that’s the sweet spot.

How did that experience change who you are today, and how you see life?

I was lucky because I saw the potential of the research that was happening. Sometimes that’s all it takes, to see recovery is possible. I think that people go through adverse times and you can let it get the best of you. You can drown in it or say ‘I can conquer this.’ Having that attitude up front is key. I’m a pretty positive person anyway, but I chose things to be grateful for every day. The adversity I faced led me to the work I do today and the ability to work with amazing people. It led me to my husband who helped me to walk again (he was actually one of my trainers!). I have an incredible service dog Ozzie because of it. It’s hard to see the good in a traumatic event when you are in the thick of going through it, but I always knew there was a bigger purpose and bigger plan — I hung on to that. 

What does well-being and ‘Thriving’ mean to you?

Well-being to me encompasses six areas – physical, mental, spiritual, emotional, environmental, and intellectual. I have not achieved full balance in these areas. But I certainly try to be conscious of these areas in my life. Thriving for me means thriving in all these areas. I can be off in one and it can impact the other things.

What are you most looking forward to now? 

Serving more patients through the plans we work with through Utilize. We have an entire team that is so excited to help them, and we’re just getting started.