Us, Interrupted is a series that focuses on public figures as well as professionals on the front lines of the COVID-19 global pandemic. During this unprecedented crisis, we hope these stories of vulnerability and resilience will help us move forward, stronger together.
Charles Yu is a writer of fiction and nonfiction whose writing has appeared in numerous magazines and literary journals, including Slate, Esquire, Wired, and New York Times Style Magazine. He has also written for television, including HBO’s Westworld. Yu’s newest book, Interior Chinatown, was released in February 2020. His first book, How To Live Safely in a Science Fictional Universe, was named a New York Times Notable Book and listed as one of the best books of 2010 by Time magazine.
Here, Yu shares with us how he and his family are adapting to life during COVID-19: with exercise, getting outside, and maintaining connection with loved ones online, as well as the challenges of self-care during this difficult time:
1. What was your life like before we learned about COVID-19, in terms of your self-care and maintaining a sense of well-being?
It actually wasn’t that different from my life now. Since 2014, I’ve been writing full-time (after having been a lawyer for many years), and although I have worked in a number of TV writers’ rooms (for the past couple of years, I have been lucky enough to be writing scripts in development), I have been working from home.
My day-to-day routine is get up, walk my dog, pour coffee, and write. I tried to exercise at least three times a week, either a class or a 3- to 4-mile walk. My wife ordered some home exercise stuff (resistance bands and floor sliders), so we can try to get workouts in while isolated at home.
Read more in MindBodyGreen.
Us, Interrupted is a series that focuses on public figures as well as professionals on the front lines of the COVID-19 global pandemic. During this unprecedented crisis, we hope these stories of vulnerability and resilience will help us move forward, stronger together.
Soledad O’Brien is a powerhouse. As the CEO of Starfish Media Group, host of the show Matter of Fact, and an award-winning broadcast journalist, she is used to busy days. She also started the PowHERful Foundation with her husband, supporting women in their journey to higher education.
Here, she shares with us how she and her family are adapting to life during COVID-19: with schedules, long walks, and how it has affected her physical and emotional well-being.
What was your life like before we learned about COVID-19, in terms of your self-care & maintaining a sense of well-being?
I don’t think I was very good at self-care. I travel a lot for work, and it’s easy to get exhausted. I tried my best to get six to eight hours of sleep and avoid red-eye flights as much as possible. The main thing was eating well and trying to get enough sleep.
In terms of other aspects of my well-being, a big part of it for me was needing to feel “useful,” as in getting stuff done. I’m a box checker, and I’d feel good knowing if I got everything on my list done. I never found much relaxation in cooking, but I’d volunteer to clean up, for instance; that would help me feel like I was being useful.
Read more in MindBodyGreen.
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**
Canadian and international initiatives aim to apply AI to help solve global health conundrums
As we grapple with the coronavirus (COVID-19) pandemic, the pattern of viral spread may have been identified as early as Dec. 31, 2019, by Toronto-based BlueDot.
The group identified an association between a new form of pneumonia in China and a market in Wuhan, China, where animals were being sold and reported the pattern a full week ahead of the World Health Organization (which reported on Jan. 9) and the U.S. Centers for Disease Control and Prevention (which reported it on Jan. 6).
Dr. Kamran Khan, a professor of medicine and public health at the University of Toronto, founded the company in 2014, in large part after his experience as an infectious disease physician during the 2003 SARS epidemic.
The BlueDot team, which consists largely of doctors and programmers, numbering 40 employees, published their work in the Journal of Travel Medicine.
“Our message is that dangerous outbreaks are increasing in frequency, scale, and impact, and infectious diseases spread fast in our highly interconnected world,” Khan wrote via email. “If we want to get in front of these outbreaks, we are going to have to use the resources available to us — data, analytics, and digital technologies — to literally spread knowledge faster than the diseases spread themselves.”
In the past, BlueDot has been able to predict other patterns of disease spread, such as Zika outbreak in south Florida. Now its list of clients includes the Canadian government and health and security departments around the world. They combine AI with human expertise to monitor risk of disease spread for over 150 different diseases and syndromes globally.
BlueDot, as a company, speaks to the emerging trend of using AI for global health.
In India, for instance, Aindra Systems uses AI to assist in screening for cervical cancer. Globally, one woman dies every two minutes due to cervical cancer, and half a million women are newly diagnosed globally each year: 120,000 of these cases occur in India, where rates are increasing in rural areas.
Founded in 2012 by Adarsh Natarajan, the Aindra team recognized that, in India, mortality rates were high in part due to the six-week delay between collecting samples and reading pathology during cervical cancer screening programs. It was also a human resources issue: in India, one pathologist is expected to serve well over 134,000 Indians.
With the aim of reducing the workload burden and fatigue risk (misdiagnosis rates can increase if the reader is tired and overworked), Aindra built CervAstra. The automated program can stain up to 30 slides at a time and then identify, through an AI program called Clustr, the cells that most appear to be cancerous.
The pathologist then spends time on the flagged samples. Much like traditional global health programs, Aindra works closely with several hospitals and local NGOs in India, and hopes their technology may later be adopted by other developing countries.
“Point of care solutions like CervAstra are relevant to a lot of countries who suffer from forms of cancer but don’t have infrastructure or faculties to deal with it in population based screening programs,” Natarajan says.
Natarajan also points to other areas where AI is relevant in global health, such as drug discovery or assisting specific medical specialists in areas like radiology and pathology. Accenture was able to use AI to identify molecules of interest within 10 months as opposed to the typical timeline of up to 10 years.
The Vector Institute, based in Toronto, is also plugging into the potential of AI and global health. It works as an umbrella for several AI startups, some with a health focus and all aiming to have a global impact.
Melissa Judd, director of academic partnerships at Vector Institute, points to the United Nations’ sustainable development goals as a framework upon which to help orient AI towards improving global health. Lyme disease, for instance, is a global health issue that also comes up against the topic of climate change, and recently a Vector-supported AI initiative was able to identify ticks that spread of Lyme disease in Ontario.
Last December, the Vector Institute launched the Global Health and AI Challenge (GHAI) — a collaboration with the Dalla Lana School of Public Health to engage students from across the University of Toronto (from business to epidemiology to engineering) in critical dialogue and problem solving around a global health challenge.
The potential of AI for global health is immense. Major academic journals are also taking note. Last April the Lancet launched the Artificial Intelligence in Global Health report. By looking at 27 cases of how AI has been used in healthcare, editors proposed a framework to help accelerate the cost-effective use of AI in global health, primarily through collaboration between various stakeholders.
As well, a recent commentary in Science identified several key areas of potential for AI and global health, such as low-cost tools powered by AI (for instance an ultrasound powered through a smartphone) and improving data collection during epidemics.
Yet, the authors caution against seeing AI as a panacea and emphasize that empowering local, country-specific, technology talent will be key, as inequitable redistribution of access to AI technology could worsen the rich-poor divide in global health.
This warning aside, Khan with BlueDot is optimistic.
“We are just beginning to scratch the surface as there are many ways that AI can play a key role in global health. As access to data increases in volume, variety and velocity, we will need analytical tools to make sense of these data. AI can play a really important role in augmenting human intelligence,” Khan says.
**Originally published in CBC News**
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.
Two recent US initiatives: the New York Times’ rare disease column and a TBS series called Chasing the Cure are pointing to an emerging trend in the media: the idea that medicine can crowdsource ideas to diagnose difficult cases. But, can it be used to help diagnose patients, and what are the potential pitfalls?
Reaching a correct diagnosis is the crucial aspect of any consultation, but misdiagnosis is common, with some studies suggesting that medical diagnoses can be wrong, up to 43% according to some studies. This concern was the focus of a recent report by the World Health Organization. Individual doctors may overlook something, draw the wrong conclusion, or have their own cognitive biases which means they make the wrong diagnosis. And while hospital rounds, team meetings, and sharing cases with colleagues are ways in which clinicians try to guard against this, medicine could learn from the tech world by applying the principles of “network analysis” to help solve diagnostic dilemmas.
A recent study in JAMA Network Open applied the principle of collective intelligence to see whether combining physician and medical students’ diagnoses improved accuracy. The research, led by Michael Barnett, of the Harvard Chan School of Public Health, in collaboration with the Human Diagnosis Project, used a large data set from the Human Diagnosis Project to determine the accuracy of diagnosis according to level of training: staff physicians, trainees (residents and fellows), and medical students. First, participants were provided with a structured clinical case and were required to submit their differential diagnosis independently. Then the researchers gathered participants into groups of between two and nine to solve cases collectively.
The researchers found that at an individual level, trainees and staff physicians were similar in their diagnostic accuracy. But even though individual accuracy averaged only about 62.5%, it leaped to as high as 85.6% when doctors solved a diagnostic dilemma as a group. The larger the group, which was capped at nine, the more accurate the diagnosis.
The Human Diagnosis Project now incorporates elements of artificial intelligence, which aims to strengthen the impact of crowdsourcing. Several studies have found that when used appropriately, AI has the potential to improve diagnostic accuracy, particularly in fields like radiology and pathology, and there is emerging evidence when it comes to opthamology.
However, an issue with crowdsourcing and sharing patient data is that it’s unclear how securely patient data are stored and whether patient privacy is protected. This is an issue that comes up time and time again, along with how commercial companies may profit from third parties selling these data, even if presented in aggregate.
As such, while crowdsourcing may help reduce medical diagnostic error, sharing patient information widely, even with a medical group, raises important questions around patient consent and confidentiality.
The second issue involves the patient-physician relationship. So far it doesn’t appear that crowdsourcing has a negative impact in this regard. For instance, in one study over half of patients reported benefit from crowdsourcing difficult conditions, however very few studies have explored this particular issue. It’s entirely possible that patients may want to crowdsource management options for instance, and obtain advice that runs counter to their physicians’ and theoretically this could be a source of tension.
The last issue involves consent. A survey, presented at the Society of General Internal Medicine Annual Meeting in 2015, reported that 80% of patients surveyed consented to crowdsourcing, with 43% preferring verbal consent, and 26% preferring written consent (31% said no consent was needed). Some medico-legal recommendations, however, do outline the potential impact on physicians who crowdsource without the appropriate consent, in addition to the possible liabilities around participating in a crowdsourcing platform when their opinion ends up being incorrect. Clearly these are issues that have no clear answer: and we may end up in a position where patients are eager to crowdsource difficult-to-diagnose (and treat) sets of symptoms, but physicians exercise sensible caution.
It’s often said that medical information doubles every few months, and that time is only shortening. Collectively, there’s an enormous amount of medical knowledge and experience both locally and globally that barely gets tapped into when a new patient reaches our doors in any given hospital or clinic. Applying network intelligence to solving the most challenging, as well as the illusory “easy,” diagnosis, may give patients the best of both worlds: the benefit of their doctor’s empathetic care with the experience and intelligence of a collective many, but the potential downsides deserve attention as well.
**Originally published in the British Medical Journal**
Here’s why communicating public health risk during an epidemic is so challenging
Ann, a friend and mentor in her 50s, exclaimed over coffee at the end of January: “You know, Amazon is sold out of medical masks. You just can’t get any now. But I’m going upstate this weekend, so I should have better luck there.” I looked at her quizzically. At the time, the World Health Organization (WHO) had not yet announced that the newly named disease COVID-19 (formerly known as 2019-nCoV), caused by the virus SARS-CoV-2 (or simply “coronavirus”) was a Public Health Emergency of International Concern (PHEIC), but this announcement was delayed for several days. Besides, masks should only be reserved for people with symptoms.
Ann is an intellectual, someone who doesn’t easily head into panic mode (this helped her in her law career immensely, and later as a CEO and business leader). But in that moment, she had made up her mind: the masks would be a prudent thing to purchase, despite the lack of indication that they were needed. Effectively, Ann was hedging on the idea that, with the messages she received through the media and her friends, it would be better to be more conservative and overly prepared for the worst, given the potential consequences of being underprepared.
It immediately struck me that, despite being trained in both epidemiology and medicine, I wasn’t entirely sure what to advise Ann at the time: the messages I had received, and articles I had read, were no more consistent. There was still much uncertainty around the coronavirus in terms of how serious it was projected to be and what ordinary citizens could do to minimize risk. We all make decisions every day despite uncertainty, and when emotions come into play it can make things trickier.
But when it comes to public health, where the risks of sending the “wrong” message can have devasting consequences—unnecessary anxiety on the one hand (which can take an immense psychological toll) and thousands of unnecessary deaths on the other. To me, one thing is clear: the messaging around coronavirus thus far has been far from ideal, which suggests that uncertainty in a public health emergency is a wrench that can have devastating consequences if it isn’t harnessed appropriately.
Coronavirus is a moving target, as most epidemics are. As a Canadian, I watched with curiosity when Canadian airports decided on January 17 not to screen travelers for coronavirus (the effectiveness of screening is debatable, but the U.S. had already mandated it). But this then changed a mere one day later. The messaging was all over the place: “We thought it wasn’t necessary, but oops, now it might be.” Initially, the WHO wasn’t as concerned: the information and data about coronavirus wasn’t enough to call it an “emergency,” perhaps in part because the institution was reliant on a whole host of assumptions, such as the accuracy of data from China, a country not exactly known for transparency (with some noting the government may have purposely misled the public).
Gradually, the WHO became more concerned, finally on January 30 labelling coronavirus as a PHEIC, which implies a seriousness and a whole other set of other measures should be taken. Now countries as far and wide as Italy, Iran, Korea, and Spain are reporting a high concentration of cases. As of Wednesday, February 26, over 2,700 people had died worldwide from coronavirus since December and over 81,000 were infected globally. To put that in perspective, the SARS epidemic of 2003, which began in November 2002, infected over 8,000 people and led to 774 deaths in a period of six months.
Today the core messages remain unclear. For instance, the WHO has refused to officially advise no travel to China, but the U.S. State Department made this advisory earlier this month. For weeks we also received mixed messaging about human-human transmission, which is now clear, and more disturbingly that it can occur even when someone isn’t symptomatic (though it is rare). Even epidemiologists had trouble deciding how bad it really is. One reason is that a traditional data point in epidemiology, the R0 value, which is the average number of people an infected person is expected to transmit a disease to, is limited in its predictability.
Still, several doctors and public health professionals have taken to social media to remind the world that the flu kills more, as an attempt to dissuade fears, but COVID-19 is more severe, not just in its the ability to send more affected persons into intensive care (like SARS), and that it can kill even young and healthy hosts (as opposed to the more vulnerable who are more affected by the flu), and by most accounts has a higher case fatality rate (the proportion of those with the virus who die), somewhere around 2 percent (though this rate may be lower—0.7 percent—outside of China’s Hubei province) compared to the flu (which has a case fatality rate of around 0.1 percent).
All of this whiplash points to one perhaps uncomfortable thing: no one really knows how bad COVID-19 is, and how much damage it could eventually lead to. We know from postmortems of how SARS and Ebola were approached—both epidemics that provided an opportunity for bodies like the WHO and the Centers for Disease Control to learn from (the CDC provided a report on their Ebola response, and the WHO released a report on outbreak communication immediately after SARS)—that waiting too long to sound the alarm can be disastrous. We also know that the early predictions were based on assuming that China was being transparent and honest about their situational assessment, something we now understand was not the case.
I recently spoke with Kathryn Bertram, of the Johns Hopkins Center for Communication Programs (JHU CCP), who pointed me to the extended parallel process model as a helpful starting point to examine public health messaging during an epidemic. It considers both our rational reactions and emotional reactions (primarily fear) to help determine the best course of action for behavior. On the rational end, we must ask ourselves about “efficacy”—this refers to the effectiveness of a solution (for instance wearing a face mask or avoiding travel to China) and well as our perceptions on how as individuals we can institute this solution effectively. On the emotional end, we ask ourselves about the severity—how severe might it be if we, as individuals were infected, as well as susceptibility (how likely we might contract it).
Herein lies the issue: the perceived threat rests largely on the information we receive from experts. If the threat is high, we make decisions to take protective action. If we are told that the threat is low or even trivial, we are less motivated to protect ourselves even if we have the resources to do so. When an epidemic is underway, uncertainty can create fertile ground for mixed messages and inconsistency, which in itself can breed mistrust and fear.
Reflecting back to my conversation with Ann, I’m reminded of Annie Duke’s book Thinking in Bets, in which she makes a persuasive argument that, as individuals, we’re often required to make decisions based on having incomplete information. Duke uses the analogy of poker, where decisions are made based on an uncertain future. A good decision, despite this uncertainty, rests on whether we use the right process to come to that decision.
As individuals, we also benefit from thinking back to situations where we may have chosen one way but felt if we had a similar choice again we would choose differently, so our memories play a role as well (and arguably for public health we can rely on our collective memory from other coronavirus epidemics, like SARS). She likens our decisions to bets: given the information available to us, along with our memories of how past decisions panned out, and acknowledging that some of the outcome is due to chance, what might be the best choice to make that would most likely provide the most benefit for our future selves?
Bertram underscores the core risk communication principles, which can also be applied to media covering the epidemic: communicate often, communicate what is and isn’t known clearly, and provide simple action items for individuals to take (so things like handwashing).
Similarly, public health stakeholders should communicate what is and isn’t known, coordinate messages to help ensure consistency, and perhaps most importantly, acknowledge that their views (and thus their messaging) may change quickly; thankfully more recently media organizations are choosing to express this uncertainty and a recent op-ed in the New York Times underscores many of these principles, as “people react more rationally and show greater resilience to a full-blown crisis if they are prepared intellectually and emotionally for it.” The authors also urge that we consider using the term “pandemic” (though the WHO is not yet comfortable with this).
Effectively, while the WHO still presents a hopeful view, it and other organizations played poker on a global scale—and the chips they were playing belonged to entire communities. Their decisions and messages matter, and on balance, it might be best to bet that the consequences of underestimating the severity of the pandemic may be worse than overestimating it. The alternative, which brings to mind the dog meme “this is fine,” could lead to both distrust and potentially thousands of unnecessary deaths. It seems that, despite the WHO finally conceding that COVID-19 continues to poses a “grave threat” to the world and may qualify as the long-dreaded “disease X,” the briefing yesterday remained vague and hesitant, and even domestic messaging about whether the virus is contained or spreading continues to be inconsistent. Some have even suggested we finally accept that COVID-19 may be “unstoppable.” Clearly, we’re still down a few chips.
**Originally published in Scientified American, on February 26 2020**
There’s more than meets the eye — here are some tips to help avoid confusion.
In August 2019, JAMA Pediatrics, a widely respected journal, published a study with a contentious result: Pregnant women in Canada who were exposed to increasing levels of fluoride (such as from drinking water) were more likely to have children with lower I.Q. Some media outlets ran overblown headlines, claiming that fluoride exposure actually lowers I.Q. And while academics and journalists quickly pointed out the study’s many flaws — that it didn’t prove cause and effect; and showed a drop in I.Q. only in boys, not girls — the damage was done. People took to social media, voicing their concerns about the potential harms of fluoride exposure.
We place immense trust in scientific studies, as well as in the journalists who report on them. But deciding whether a study warrants changing the way we live our lives is challenging. Is that extra hour of screen time really devastating? Does feeding processed meat to children increase their risk of cancer?
As a physician and a medical journalist with training in biostatistics and epidemiology, I sought advice from several experts about how parents can gauge the quality of research studies they read about. Here are eight tips to remember the next time you see a story about a scientific study.
1. Wet pavement doesn’t cause rain.
Put another way, correlation does not equal causation. This is one of the most common traps that health journalists fall into with studies that have found associations between two things — like that people who drink coffee live longer lives — but which haven’t definitively shown that one thing (coffee drinking) causes another (a longer life). These types of studies are typically referred to as observational studies.
When designing and analyzing studies, experts must have satisfactory answers to several questions before determining cause and effect, said Elizabeth Platz, Sc.D., a professor of epidemiology and deputy chair of the department of epidemiology at the Johns Hopkins Bloomberg School of Public Health. In smoking and lung cancer studies, for example, researchers needed to show that the chemicals in cigarettes affected lung tissue in ways that resulted in lung cancer, and that those changes came after the exposure. They also needed to show that those results were reproducible. In many studies, cause and effect isn’t proven after many years, or even decades, of study.
2. Mice aren’t men.
Large human clinical studies are expensive, cumbersome and potentially dangerous to humans. This is why researchers often turn to mice or other animals with human-like physiologies (like flies, worms, rats, dogs and monkeys) first.
If you spot a headline that seems way overblown, like that aspirin thwarts bowel cancer in mice, it’s potentially notable, but could take years or even decades (if ever) to test and see the same findings in humans.
3. Study quality matters.
When it comes to study design, not all are created equal. In medicine, randomized clinical trials and systematic reviews are kings. In a randomized clinical trial, researchers typically split people into at least two groups: one that receives or does the thing the study researchers are testing, like a new drug or daily exercise; and another that receives either the current standard of care (like a statin for high cholesterol) or a placebo. To decrease bias, the participant and researcher ideally won’t know which group each participant is in.
Systematic reviews are similarly useful, in that researchers gather anywhere from five to more than 100 randomized controlled trials on a given subject and comb through them, looking for patterns and consistency among their conclusions. These types of studies are important because they help to show potential consensus in a given body of evidence.
Other types of studies, which aren’t as rigorous as the above, include: cohort studies (which follow large groups of people over time to look for the development of disease), case-control studies (which first identify the disease, like cancer, and then trace back in time to figure out what might have caused it) and cross-sectional studies (which are usually surveys that try to identify how a disease and exposure might have been correlated with each other, but not which caused the other).
Next on the quality spectrum come case reports (which describe what happened to a single patient) and case series (a group of case reports), which are both lowest in quality, but which often inspire higher quality studies.
4. Statistics can be misinterpreted.
Statistical significance is one of the most common things that confuses the lay reader. When a study or a journalistic publication says that a study’s finding was “statistically significant,” it means that the results were unlikely to have happened by chance.
But a result that is statistically significant may not be clinically significant, meaning it likely won’t change your day-to-day. Imagine a randomized controlled trial that split 200 women with migraines into two groups of 100. One was given a pill to prevent migraines and another was given a placebo. After six months, 11 women from the pill group and 12 from the placebo group had at least one migraine per week, but the 11 women in the pill group experienced arm tingling as a potential side effect. If women in the pill group were found to be statistically less likely to have migraines than those in the placebo group, the difference may still be too small to recommend the pill for migraines, since just one woman out of 100 had fewer migraines. Also, researchers would have to take potential side effects into account.
The opposite is also true. If a study reports that regular exercise helped relieve chronic pain symptoms in 30 percent of its participants, that might sound like a lot. But if the study included just 10 people, that’s only three people helped. This finding may not be statistically significant, but could be clinically important, since there are limited treatment options for people with chronic pain, and might warrant a larger trial.
5. Bigger is often better.
Scientists arguably can never fully know the truth about a given topic, but they can get close. And one way of doing that is to design a study that has high power.
“Power is telling us what the chances are that a study will detect a signal, if that signal does exist,” John Ioannidis, M.D., a professor of medicine and health research and policy at Stanford Medical School said via email.
The easiest way for researchers to increase a study’s power is to increase its size. A trial of 1,000 people typically has higher power than a trial of 500, and so on. Simply put, larger studies are more likely to help us get closer to the truth than smaller ones.
6. Not all findings apply to you.
If a news article reports that a high-quality study had statistical and clinical significance, the next step might be to determine whether the findings apply to you.
If researchers are testing a hypothetical new drug to relieve arthritis symptoms, they may only include participants who have arthritis and no other conditions. They may eliminate those who take medications that might interfere with the drug they’re studying. Researchers may recruit participants by age, gender or ethnicity. Early studies on heart disease, for instance, were performed primarily on white men.
Each of us is unique, genetically and environmentally, and our lives aren’t highly controlled like a study. So take each study for what it is: information. Over time, it will become clearer whether one conclusion was important enough to change clinical recommendations. Which gets to a related idea …
7. One study is just one study.
If findings from one study were enough to change medical practices and public policies, doctors would be practicing yo-yo medicine, where recommendations would change from day to day. That doesn’t typically happen, so when you see a headline that begins or ends with, “a study found,” it’s best to remember that one study isn’t likely to shift an entire course of medical practice. If a study is done well and has been replicated, it’s certainly possible that it may change medical guidelines down the line. If the topic is relevant to you or your family, it’s worth asking your doctor whether the findings are strong enough to suggest that you make different health choices.
8. Not all journals are created equal.
Legitimate scientific journals tend to publish studies that have been rigorously and objectively peer reviewed, which is the gold standard for scientific research and publishing. A good way to spot a high quality journal is to look for one with a high impact factor — a number that primarily reflects how often the average article from a given journal has been cited by other articles in a given year. (Keep in mind, however, that lower impact journals can still publish quality findings.) Most studies published on PubMed, a database of published scientific research articles and book chapters, are peer-reviewed.
Then there are so-called ‘predatory’ journals, which aren’t produced by legitimate publishers and which will publish almost any study — whether it’s been peer-reviewed or not — in exchange for a fee. (Legitimate journals may also request fees, primarily to cover their costs or to publish a study in front of a paywall, but only if the paper is accepted.) Predatory journals are attractive to some researchers who may feel pressure to ‘publish or perish.’ It’s challenging, however, to distinguish them from legitimate ones, because they often sound or look similar. If an article has grammatical errors and distorted images, or if its journal lacks a clear editorial board and physical address, it might be a predatory journal. But it’s not always obvious and even experienced researchers are occasionally fooled.
Reading about a study can be enlightening and engaging, but very few studies are profound enough to base changes to your daily life. When you see the next dramatic headline, read the story — and if you can find it, read the study, too (PubMed or Google Scholar are good places to start). If you have time, discuss the study with your doctor and see if any reputable organizations like the Centers for Disease Control and Prevention, World Health Organization, American Academy of Pediatrics, American College of Cardiology or National Cancer Institute have commented on the matter.
Medicine is not an exact science, and things change every day. In a field of gray, where headlines sometimes try to force us to see things in black-and-white, start with these tips to guide your curiosity. And hopefully, they’ll help you decide when — and when not to — make certain health and lifestyle choices for yourself and for your family.
**Originally published in the New York Times**
Roger Holzberg is the co-founder, along with Leonard Sender, MD, of Reimagine Well, a company that designs and builds immersive healing programs for hospitals and treatment centers. The Infusionarium™ platform empowers patients to receive treatment in the place they believe will best heal them, then empowers them with enhanced educational “Learn Guides” and a safe support community for their patient journey. He served as the first (consulting) Creative Director for the National Cancer Institute (NCI). The “evolution” of Cancer.gov, the NCI Facebook, Twitter, Mobile and YouTube channels are all projects that his creative team took from concept through launch. Previously, Roger spent 12 years as an award-winning Creative Director / Vice President at Walt Disney Imagineering where he had the opportunity to lead the creative development for a broad portfolio of projects ranging from PlayStation® games to theme park icons and multiple Disney World Celebrations; from mass audience interactive experiences and rides to the MMOG Virtual Magic Kingdom. In “classic media,” he has written and directed feature films and television, but is genuinely proud of researching and writing the IMAX film “The Living Sea” (Academy Award nomination for documentary). Roger is a father; a 15-year cancer survivor; and a competitive triathlete (3 events yearly), using the sport to raise research dollars for causes he supports.
1.What prompted you to start Reimagine Well?
As a cancer survivor I had a firsthand look at how “unhealing” the patient experience was in the US. At the time I was diagnosed I was a Vice President and Creative Director at Walt Disney Imagineering. I put together a group of volunteers from Disney that were either cancer survivors or caregivers and we worked on projects that ranged from a support platform to contributing to the redesign of the lobby at Children’s Hospital Los Angeles, and then doing the “living with” stories for the launch of Livestrong.com and adapting a Disney attraction called “Turtle Talk with Crush” for use with pediatric patients at Children’s Hospital of Orange County. I was then recruited to be the first (consulting) creative director at the National Cancer Institute, redesigning Cancer.gov and taking the institute into social media and story telling. All of these experiences planted seeds in their own way for re-envisioning the healing environment.
2. You had an interesting journey as a Disney Imagineer, what was that like? And How does that inform how you approach healthcare?
Back in 1964 in Flushing Meadows New York, when I was eight years old, I attended the Worlds Fair and saw “Great Moments With Mr. Lincoln”, the first audio animatronic figure and nearly tore my dad’s jacket sleeve off when I asked ‘how did that happen?’ His response stuck with me: “A man named Walt Disney invented that.” That was the beginning, and since then I have been drawn to what’s known as “experience design” (as opposed to film and consumer product design). Experience design is so much more powerful when a medium is multi-dimensional. I ended up taking college courses in design and finishing up at the California Institute of Arts. In my early career in the entertainment industry I worked in special effects and production design, and wrote large format IMAX films. The educational expansion of the Imax films led to an opportunity to help build “Knowledge Adventure” and the “Jumpstart” brand. I was then recruited to Disney Interactive to be their first creative director. The Imagineering division of Disney recruited me to work on the Millennium Celebration and lead the creative teams on the 100 Years Of Magic project at all four Disneyworld theme parks. After 9/11 we saw a big retraction in vacation travel and I had the opportunity to build a team and lead a project called Virtual Magic Kingdom. This had 5 million children interacting with children in brick and mortar parks and sometimes during the experiences that followed. So the seed was planted around blending the things that hadn’t been done before. I spent a total of 15 years with Disney. Walt Disney coined the phrase the “architecture of reassurance.” Disney parks were designed to be a safe place for families to play. At Reimagine Well we try to create an ‘architecture of healing’, creating a safe and special place for patients and families to heal. So my 15 years at Disney informed what I did to create an emotionally engaging space for people to play. I realized the same tools could be used for patients and families to experience the patient journey.
3.You had a health scare of your own not that long ago. Can you share more about that?
Cancer has been a ribbon throughout my life, from losing one of my best friends as a child to pediatric cancer and losing my mom to cancer in my 20s. For me, as a competitive athlete I got to know my body really well, and in 2004 I began noticing that something subtle was off. I’d gained weight without changing my diet or exercise regimen, I hit an energy wall in the afternoons. On the anniversary of my mother’s death I remembered her saying ‘don’t pretend nothings wrong as that’s what I did.’ I spoke to my doctor, had an MRI of my neck, and it was clear that I had thyroid cancer. One in three American women and one in two men hear the words “you have cancer” during their lifetime, but in that moment the world becomes a rush of white noise. You see a physician across from you speaking a language you don’t understand. I call it the “terror moment.” When you’re in shock you don’t make the most rational decisions since you are operating out of fear. You’re staring your own mortality.
It wasn’t until I was undergoing radiation treatment when the healing environment aspect hit me. The walls in the hospital hadn’t been painted since 1980s and this was the most un-healing experience I could imagine. I came from a place where the architecture of reassurance is what we practiced. It didn’t even smell right! It hit me like a ton of bricks that the patient experience, even though I didn’t know that term yet, was something to be worked on.
4. What were the things that helped you get through the cancer diagnosis?
I told very few people about the diagnosis, and actually didn’t tell my kids until after the surgery, when the pathology results came back. I remember going online and seeing 70 million hits for my search — I was in overload!
But I spoke with a good friend of mine who was a cancer survivor who advised me to just focus on one thing at a time. Effectively, the patient journey has different phases, from diagnosis to treatment, then healing and well-being. So the biggest thing that helped was when I realized I only needed to focus on just one of those phases at a time, suddenly I could catch my breath again and look at phase relevant to me at that point was enormously helpful. This then informed our social platform for Reimagine Well, which helps patients set achievable health goals and use the wisdom of the healthcare community (which includes healthcare professionals) to navigate the patient journey..
5. What’s the most misunderstood aspect of cancer and dealing with a diagnosis/living with cancer?
There are a few things.
The first is that unless it’s critical, take the time to let yourself get the information you need. More often than not you have time before you need to jump into treatment. Take the time to find the right care team, do the research and get informed and get a second opinion.
The second myth is that all cancer treatments are the same: that’s not the case. A small community center may not include the clinical trials that may be available at a larger center. You owe it to yourself to do the research if your odds for survival are potentially better at a larger center.
The third is that clinical trials turn patients into guinea pigs. This is a big misunderstanding. Clinical trials often provide the best, most attentive, cutting edge clinical care someone can get, and if a clinician recommends a trial you qualify for, don’t be afraid to consider it.
The last is the role of diet and exercise. A healthy BMI can significantly reduce the chance of cancer recurrence and there are recommendations for 45-75minutes of exercise daily. Unfortunately very few doctors are trained in these lifestyle factors. Find a credentialed Registered Dietician to help you design the best program for you and your specific health goals and medical needs.
6. What does thriving mean to you?
Thriving in my new normal means having an emotional, spiritual, and physical health balance. Compared to 15 years ago, I can honestly say my work, family, and active lifestyle are so much better today than it was before my cancer diagnosis. I think it was because of my approach to the disease, my new career with Reimagine Well (which happens to be very rewarding) and adopting a healthy and active lifestyle. Thriving also involves having a supportive community, we hold each other accountable for our health goals as well as providing emotional support and friendship.
7.What are you most looking forward to with Reimagine Well and in general?
Right now I’m teaching a Healthcare by Design course at the California Institute of Arts. Last year we delivered a pilot project to Children’s Hospital Los Angeles and this year we will create a pilot program for the Henry Mayo Newhall Hospital in Valencia, so helping to educate and train the medical experience designers of tomorrow is super rewarding. At Reimagine Well we are launching a new experience design program, which involves reducing the need for excessive sedation in several pediatric medical centers, and using virtual reality as part of this program. With the proof of concept pilot program we were able to reduce the mean age of sedation from 10 to 3; a formal clinical study (with research ethics approval) is now underway with Nebraska Medicine on this. In 2020 we will also be expanding into pediatric behavioral programs, and adult oncology.
**Originally published on ThriveGlobal**
On the island of Okinawa, Japan, driving about 90 minutes up the coast from the capital Naha lands you in Ogimi. Known as the “longevity village,” it historically has the most centenarians per square mile compared to anywhere else on Earth.
One of the factors that may benefit their health most: consistent and regular social interaction, in the form of tight-knit community networks. I was invited to sit in on one of their formal monthly meetings, arranged by the Japan National Council of Social Welfare.
When I interviewed 90-year-old Fumi Teruya, she explained that every morning she sweeps the deck of her home. In doing that she exercises but also catches up with neighbors around the village who are out for their morning walk. Other friends regularly come over to cook lunch with her, and the evenings are often spent singing or chatting with neighbors, all of which she believes keeps her youthful and happy.
The research agrees: These relationships may boost longevity.
Back in the capital, renowned doctor and longevity researcher Makoto Suzuki, M.D., Ph.D., of the Okinawa Research Center for Longevity Science (ORCLS) has been studying centenarians in Okinawa since 1976. He has found that these networks form a sense of social cohesion that is an important part of why many Okinawans have enjoy a long, and often disease-free, life. These networks are known as moai.
“Moais involve ritualistic connections that are both reliable and close knit, which involve a common interest but not usually a common professional identity,” Suzuki said. “In my own moai, we have 10 members, and I’m the only doctor. A time is decided, a venue is decided, and the rules are decided as well.”
Suzuki’s ORCLS research partner since the last 1990s and co-author of The Okinawa Program Craig Wilcox, Ph.D., MHSc, FGSA, added, “A moai is more than just a friend group. It’s often village-based and consists of rituals and institutions that keep people connected.”
There’s a global problem with loneliness.
It’s no secret that loneliness is an epidemic, and a study published in June reviewed how our general health and wellness can be affected by our social networks, and during the holiday season, isolation is felt more deeply. Loneliness has been linked to heart disease, metabolic syndrome, diabetes, malnutrition, dementia, depression, and mortality. One theory behind this link is that chronic isolation disrupts a number of neuroendocrine factors that lead to higher stress response.
Over the last several years, I’ve personally encountered many patients with the disease of isolation, from discussions about end-of-life care with a patient who had become estranged from his family to a teenage girl who had overdosed and shared that the bullying about her weight had taken a toll. Upon further probing, it became clear that it wasn’t the bullying itself but that she had no one to lean on to help deal with it.
Some health systems are addressing the problem of loneliness. In the U.K., the NHS appointed a chief loneliness officer. Suzuki’s years of research suggest the answer to this epidemic might be intentionally creating our own purpose-centered social networks, in other words, moais.
In 2017, study out of Spain found that social networks, and higher frequency of social interaction, can reduce depression among older adults. Interventions aimed at improving social support among patients with cardiac disease appear promising, as are early reports from studies of seniors in Israel and in Sweden and Canadian men facing retirement. And among parents specifically, building social support systems can decrease postpartum depression and the isolation that comes with being a new parent.
What can be done to help combat loneliness?
However, these studies also face the issue of replicability, and causal associations are difficult to draw. For instance, earlier this month, a study led by Jason Chen, Ph.D., of the Center to Improve Veteran Involvement in Portland, was published in Social Psychiatry and Psychiatric Epidemiology. They found that, counterintuitively, among veterans, loneliness was associated with lower depression severity. This has prompted study authors to more closely examine the role of social support interventions.
“We are currently looking at interventions that are not only relevant to veterans just at our hospital but also in other settings,” Chen said. “In addition, our study team is interested in emphasizing the potential for loneliness interventions for our more rural, isolated populations in Oregon and beyond.”
Reza Ghomi, M.D., is a Seattle-based neuropsychiatrist who sees firsthand how social support alone can have a dramatic impact on emotional well-being.
“Social isolation has dramatic effects not only on mental health such as increasing risks for depression and anxiety, but now we are seeing it can increase risk for cognitive impairment and ultimately dementia,” Ghomi said. “Building community does the reverse and promotes a sense of well-being and satisfaction including improvement in cognitive abilities.”
When it comes to the medical community, at a time when burnout was just named as one of the biggest challenges in health care by a Lancet report, finding supporting environments remains key among health care providers. Dana Correil, M.D., an internist and co-founder of SoMeDocs (“social media doctors”), points to the benefits of her “moai” being centered around a shared interest in advocacy and health care communication.
“For doctors, social media can be a space for connection, a powerful tool to mitigate the loneliness epidemic,” Correil said. “It allows us to exchange ideas, find camaraderie and perspective for issues challenging our profession today and provides us with opportunities to make actual change.”
And the opportunity for doctors to connect offline have flourished: everything from storytelling workshops like the Nocturnists, narrative medicine programs to Schwartz rounds help build community around shared vulnerability.
They say it takes a village to raise a child. But, as the science suggests, the health and well-being of all of us may benefit from having our own village, or moai: at home, work, and everywhere in between.
**Originally published on Mindbodygreen.com**