Actor, playwright, and librettist Heather Raffo performed a powerful excerpt from her one-woman show, 9 Parts of Desire. We reached out to learn more about her inspirations, aspirations and ambition.
Heather Raffo performs on the TEDMED stage. [Sandy Huffaker]
What motivated you to perform at TEDMED?
As an artist with Iraqi and American heritage, I most wanted to launch a conversation about how we recover from war: how we survive as individuals, families, cultures and countries.
My work grapples with an ever shifting identity of what it means to be Iraqi or American and how trauma changes one’s sense of self. I was thrilled to have an opportunity to talk and learn from such diverse and profound thinkers and health care professionals about how they relate trauma and loss to survival and healing.
Why does this performance matter now? What impact do you hope the performance will have?
A few months ago I had a revelatory conversation with a US Military General. He reminded me that the effects of the wars in Afghanistan and Iraq have only begun to surface for our veterans. For Iraqis, the civilian population has experienced multiple traumas over multiple decades, the sense of belonging that once held that society together is shifting rapidly as it is throughout the Middle East.
The work I do tackles some of the most difficult conversations our nation has yet to have. It also tackles taboos rarely addressed in Middle Eastern society. It broadens the lens through which many view the Iraq war, and helps offer a complex understanding of those affected by violence.
What kind of meaningful or surprising connections did you make at TEDMED?
I connected with so many extraordinary individuals at TEDMED. But perhaps most moving, were the conversations I had with war veterans who sought me out after my performances. They were thankful that hard truths were used to break open subjects they feel have not been discussed openly. TEDMED was a unique environment to have those difficult conversations about devastating human experiences and the universal will to live.
What is the legacy you want to leave?
I’ve spent the last decades of my life devoted to bridging my Eastern and Western cultures – bringing the worst of war into a sacred artistic experience. The legacy I am working to bring about is a movement that uplifts the feminine experience, that addresses our relationship to violence and that integrates the Middle Eastern voice into the American theatrical canon.
What’s next for you?
I’m working on an adaptation of Ibsen’s A Doll’s House set in a Arab American family. What is particularly thrilling about this work is that my writing is being done from an embedded position within Middle Eastern American communities. The first mounted workshop will be at Georgetown’s Davis Performing Arts Center in December 2015.
I’m launching my Places of Pilgrimage monologue series on the web. Middle Eastern women telling their stories in their own words! It is based on a writing workshop I developed for universities and community centers both in America and internationally.
My opera Fallujah, inspired by the life of US Marine Christian Ellis, will have its world premiere at Long Beach Opera in January of 2016. The opera is composed by Tobin Stokes.
Once these three projects are up and running, links will be available on my website heatherraffo.com.
In his TEDMED talk, Elliot Swart directed our focus to telemedicine and its potential to not only replace but improve upon current diagnostic procedures. We reached out to learn more about how he is shaping the future of telemedicine.
Elliot Swart takes the TEDMED stage. [Kevosk Djansezian]
What advice would you give to other aspiring innovators and entrepreneurs?
One piece of advice I took to heart is set out to solve a problem that you truly understand. And even once you have a problem, don’t quit your day job until you have a real idea of how to solve it and why your solution is different. The most unhappy entrepreneurs I know are the ones who decided to be entrepreneurs before they had a problem to solve.
Now, I’m not suggesting you should wait around until lightning strikes. My favorite TED talk of all time is “How to start a movement” by Derek Silvers. The gift I took away from that talk is that it takes a lot of people to truly accomplish something, and that being the second, third, or even tenth person to join is as important of a role as the person who starts it. There are hundreds of amazing startups and early stage companies solving meaningful problems. Go out and find one!
What has been your main source of inspiration that drives you to innovate?
My company, 3Derm, makes a teledermatology solution to help get melanoma patients seen sooner. In my work I’ve come across a number of people who will tell me about their friends or family who have died from skin cancer. I like cool technology as much as the next guy, but what really drives me is the number of lives we’ll save if we succeed.
Why does your talk matter now? What do you hope people learn from your talk?
Telemedicine is still seen as the second best alternative – standard practice only if the patient is extremely remote or has no other options. But, slowly, we’ve seen people start to turn the corner and realize that telemedicine can be used to lower costs and increase convenience in almost any population. By developing telemedicine systems for different specialties, we are essentially distilling the diagnostic process into the necessary information, making medicine more quantitative and easier to standardize.
My company has spent four years creating a telemedicine sense for dermatology. There are many other specialties that will require years of university research and commercialization. I hope my talk can convince people of telemedicine’s potential as a standard of care and the importance of pursuing this research.
In his TEDMEDtalk, Carl Hart offered a highly provocative but evidence based view of drug addiction and its links with crime. Carl speaks from personal experience; he grew up in a poor neighborhood in Miami, where he himself engaged in petty crime and drug use. Today, Carl is an Associate Professor of Psychiatry and Psychology at Columbia University, and a self-professed advocate for social justice and science.
“I was unprepared for what I would learn as I went about making my contribution to the study of the neurobiology of addiction.” – Carl Hart, TEDMED 2014 [Photo: Kevosk Djansezian]
We reached out to Carl to learn more about why his talk is particularly timely today. Here was his response:
Today – May 19 – would have been Malcolm X’s 90th birthday, had he not been assassinated fifty years ago. Malcolm X’s influence on human rights, social justice activists, and me is increasingly apparent as society becomes more concerned about issues of over-policing in certain communities. My TEDMED talk, “Let’s quit abusing drug users,” is particularly important today because it illustrates the detrimental impact of aggressive selective drug law enforcement on communities of color.
In recent months, the issue of hostile, militarized policing has been pushed to the national forefront in response to the killing of the black, unarmed teenager, Michael Brown, by a white police officer in Ferguson, MO. Similar types of killings have occurred too often under the guise of the war on drugs. Eric Garner, Ramarley Graham, Kathryn Johnston, Trayvon Martin, and Tarika Wilson are just a few examples. In all of these cases, authorities suspected that the deceased individual was either intoxicated from or selling an illicit substance. This talk shows that dangers of drugs have been exaggerated, and that this has helped to created an environment where unjustified police killings are more likely to occur.
The importance of my talk is even further enhanced because too many people misattribute societal ills to drug problems. For example, the majority of people who use drugs – 80-90% – don’t have a drug problem. They are responsible members of our society. They are employed; they pay their taxes; they take care of their families; and in some cases, they even become President of the United States. Our three most recent Presidents all reported using illegal drugs when they were younger. In my talk, I clearly show that the real problems faced by society are not drugs but are poverty, unemployment, ignorance and the dismissal of science that surrounds drugs.
In my TEDMED talk, I also present intriguing results from my own research, during which we brought crack users into the laboratory and offered them $5 cash, or a hit of crack worth more than $5. We repeated this many times with each person over several days in the laboratory. The drug users chose the drug about half of the time, and the $5 the other half. Even a nominal amount of money was enough to deter them from taking the drug at least half of the time. These findings are inconsistent with the notion that crack users display the insane, “anything for a hit” behavior that I had been previously taught. They also demonstrate how attractive alternatives, such as viable economic opportunities, can go a long way in decreasing societal problems, including drug abuse.
On April 30, a multi-disciplinary panel of experts joined us for a Great Challenges live online event to examine health insurance’s shift from a business-to-business industry to a business-to-consumer one. Moderated by USA TODAY’s healthcare policy reporter, Jayne O’Donnell, the group discussed what is working, what’s not, and what it all means for businesses, for consumers – and ultimately – for healthcare costs. If you were unable to join us, check out the recast below:
We had so many important questions that our participants were unfortunately unable to adequately address each during our one-hour event. We gathered our unanswered questions and posed them to our participants so that they could continue the conversation off-air. Here’s what Jennifer Sclar and Abir Sen had to say:
How does a person’s gender, race, age, or socioeconomic status affect the likelihood that they will take on the consumer role in insurance purchasing?
Jennifer: The likelihood that people will have to take on the consumer role in insurance purchasing will largely be dictated by forces beyond their control. It is a role that people will increasingly be forced into, either because of the insurance mandate or because their employer is moving to a defined contribution model and away from a defined benefit model. However, there are enormous differences among groups in terms of where they will shop for insurance, how they will shop for insurance, and how successful they will be in terms of procuring the best product for the best price. There are issues and differences among groups that we know about and that we can use to try to maximize engagement across the board.
With respect to gender, we know that the overwhelming majority of health decisions are made by women. Women are far more likely to select an insurance plan for their family, make doctor’s appointments and treatment decisions for themselves and their families (including their children and their parents), and deal with insurance company billing and eligibility issues. With respect to race and ethnicity, we know that the States and the federal government have been far less successful in their efforts to reach out to minorities, and Hispanics in particular, than other uninsured groups, and this is a serious problem that needs to be addressed. With respect to socioeconomic status, we know that the ability to pay for insurance, even when it is heavily subsidized, is a huge barrier to entry for many uninsured groups. And, finally, we know that the older and sicker you are, the more likely you will be to sign up for insurance and that the long-term health of any insurance marketplace will depend on the ratio of older/sicker enrollees to young invincibles. Successful strategies to address the particular barriers to entry for each group will be imperative to the success of the ACA, as well as the long-term trend toward the consumerization of health care.
What impact will more patients taking control of their insurance purchases and having “skin in the game” have on healthcare costs?
Jennifer: Complicated plan design and increased cost sharing will lead to demand for greater price transparency and clearer billing practices. Patients will demand to know what they are being charged for, and the underlying costs. This will likely lead to greater competition and lower prices for routine care, but could result in higher prices for more complicated procedures.
Abir: That’s difficult to answer without accounting for all the other variables — the overall health of the population, the advances that are being made in medical technology, and whether the advances increase or decrease overall cost, to name a few. If all of those variables are held constant, I would expect that consumers having more skin in the game would reduce healthcare costs due to the consumer making better decisions (such as getting generic substitutions over brand name drugs where possible, going to urgent care versus ER, and getting more preventive care).
Several of you have products that allow for plan comparisons. But what resources exist for people to learn basic concepts of health insurance?
Jennifer: Most plan comparison tools offer consumers basic definitions of key insurance concepts. The problem for most consumers, including those who are highly educated, is that they are not really interested in learning about health insurance. Most consumers just want to know that they will have the coverage they want, when they need it. Health insurance is a very complicated financial product. Clear Health Analytics tries to strike a balance between the few who will want to have a deeper understanding of insurance, and the majority who want to know what they are buying (e.g. Will my doctor be in network? Are my meds covered? Can I see a mental health professional?), and what it will cost. We offer more in-depth information in pop-up boxes, which allows the screen to remain relatively clean and uncluttered. Consumers can also visit healthcare.gov and the State Based Marketplaces to learn more about health insurance; they can also consult a navigator, assister or an insurance broker.
Abir: A well-designed product will obviate the need for people to understand the nits and nats of health insurance. In 2015, you don’t need to be able to code in order to use a computer. In the 1970’s, you did. The computer industry developed user interfaces that allowed the layperson to use their product quite easily. With the advent of consumerization, a similar evolution will happen in healthcare. Now, the interface may not be solely internet-based — it may incorporate human components through phone, chat and even in-person meetings. We don’t know exactly what that looks like yet. We do know that a user-friendly interface must and will develop.
With patients rather than businesses as consumers, insurance companies will likely need to change the way they do business. What will that look like?
Abir: As individuals become more accountable for their health care costs, they are also going to start holding the entities that provide them healthcare services more accountable. This includes insurers, providers, administrators, and so on. The pressure from consumers and the dynamic of competition will force everyone to up their game or risk losing the consumer’s business! All of this will have a positive impact on product design and customer service. Insurance companies will need to create products that people actually want to buy. Providers will have to incorporate technology to improve the consumer experience. As everybody focuses on making the consumer happy, we will truly get a consumer-centric system.
As an aside, we need to stop thinking about and referring to consumers in the healthcare industry as “patients.” It’s like calling everyone who purchases auto insurance an “accident victim.” This distinction is important because the way we think about consumers needs to incorporate both those who are actually sick and accessing healthcare, but also those who aren’t and are truly just buying insurance.
A few insurance companies (such as Florida Blue) have opened brick and mortar stores to sell plans and provide customer service in-person. Is this a trend you see taking off? Why or why not?
Jennifer: This will be interesting to watch. The medical loss ratio provisions of the ACA have made brokerage commissions increasingly unaffordable for insurance companies. Commissions are characterized as administrative overhead, which means they must come out of the 15-20% of premium dollars that insurance companies are permitted to spend on administrative expenses. Insurance companies are looking for creative ways to cut administrative costs, and brokerage commissions are an easy target. Moreover, many insurance companies are eager to get into the private marketplace space. The marketplace will change many long-standing arrangements in the health insurance industry, including those among insurance companies and brokers, and those among brokers and consumers.
Abir: There is a reason why airlines don’t have brick and mortar retail stores. When people buy plane tickets, they usually want to compare across various airlines and see which one is cheapest and/or most convenient. Likewise, in a consumer driven market, individuals will want to compare across several insurance companies and find a plan that suits them the best. It doesn’t make sense for them to go to a store where they can only get plans from one insurer, being sold by that very insurer.
Each insurance policy has unique coverage constraints, co-pays, agreements with pharmacies, etc. How would you counsel a health insurance consumer to be a savvy shopper when it comes to doctors, hospitals and pharmacies so that they’re paying the least but still getting excellent care?
Jennifer: This is where access to data and innovative technology can really help consumers. Clear Health Analytics, as well as others, have created – and will continue to create – cutting-edge technologies that can help consumers evaluate costs, availability of preferred doctors, facilities and prescriptions. One of the major changes that the ACA brought was the elimination of underwriting for health insurance. This makes health insurance ripe for a major change in the way it is distributed. Brokers are no longer evaluating consumers for risk – it is merely a matter of matching the right consumer with the right policy, and that is a task that is uniquely suited for an amazing technology platform. Beyond the insurance purchasing decision, Clear Health Analytics wants to help consumers use their insurance by offering information on treatment options, costs, outcomes, and quality.
Abir: I would advise them to get an advisor who is independent, who doesn’t work for their employer, who doesn’t work for their insurance company, and has no financial conflict. Come to Gravie.com – we are open for business!
The content, views and opinions expressed in this blog post are those of the author(s) and do not imply endorsement by TEDMED. By inviting guest bloggers, TEDMED hopes to share a variety of perspectives that provoke and engage our community in discussion and debate.
Daniel Ofri opens up about medical errors on the TEDMED stage. [Photo: Sandy Huffaker]
“Doctor, it’s taken so long to get this appointment with you.” This is the opening line of so many medical visits these days, and I find myself constantly apologizing to my patients for the delay. Even though both the patients and I know that it’s a systemic issue, it’s still front and center in our personal interaction. They are frustrated that they can’t get a timely appointment, and I’m aggravated because too many medical issues pile up in the interim, making the visits we do have massively overburdened.
What does this mean for American medicine? One possibility is that the Affordable Care Act has placed us on an unsustainable path, something we hear frequently from those who oppose Obamacare. But this only holds water if the prior status quo—allowing a significant swath of America to remain outside the healthcare system—is considered acceptable. Luckily, we are slowly coming around to the ethical conclusion that the rest of the world has already made, that health care is something that all people deserve. Political realities may have forced awkward contortions in our health-care reform, accommodating multitudes of private insurance plans rather than offering a public option—concrete progress has nevertheless been made. So now the health care system must adapt. It can no longer survive on the expediencies of ignoring 15% of our population—it needs to start thinking about caring for all Americans.
A first step is considering how we allocate our existing clinical resources. The Physicians Foundation survey reported that doctors spend 20% of their time doing non-clinical paperwork. If you visualize that statistic carved out from the total number of doctors, it’s equivalent to about 170,000 doctors whose stethoscopes are sitting idle. This is a mind-boggling waste. To not be able to get an appointment with your doctor because she is spending a fifth of each day doing paperwork would sound ludicrous if it weren’t so dangerous. But patients and their serious medical conditions are getting short shrift as their doctors and nurses drown in metastasizing paperwork. Freeing up doctors’ time to see patients—a true measure of efficiency!—could make a real difference in the access problem. Amputating off even half the paperwork would be the equivalent of 85,000 new doctors available for patients.
A second step is to start planning ahead for healthcare that fits the needs of our patients, now that we are getting serious about taking care of all patients. For that, we need to delve a little more deeply into the access issue. Other countries have access issues also, but their long waiting lists relate primarily to specialties and procedures. What is uniquely American about our access problem is that it is particularly difficult to get primary care. Our inability to provide basic medical care for all Americans is what torpedoes the net efficacy of our medical system. Despite our superior technological advancements, we rank dead last in overall health outcomes compared with other developed countries. There is no secret about how to improve this—it’s tending to the basics. Research shows that the more primary care patients receive, the healthier they are and the longer they live. But the American system is not set up for this. Going forward, the only way to have a significant impact on our nation’s health is by improving access to primary care. Expanding training slots in family medicine, internal medicine, geriatrics, gynecology, and pediatrics is a necessary step, because the sheer growth of the American population means that we will need at least 20,000 more primary care doctors, if not more. But alongside increasing the pipeline of primary care doctors, we have to rethink the way we value and reimburse medical care.
It is an embarrassing truth that in the United States access to medical care relates to how lucrative that care is. It’s much faster and easier to get expensive tests and procedures than to take care of your general health. The fee-for-service system has consistently weighted procedure-based services (surgeries, endoscopies, MRIs) as having more “value” than cognitive-based services (treating diabetes, asthma, or heart failure). This absurd and patently profit-driven assessment means that we end up with more procedures and higher bills but poorer health and ultimately less access to basic medical care. Newer payment systems—bundled payments, pay-for-performance, accountable care—have the potential to jigger the balance somewhat. But our fundamental hierarchy remains completely backwards. Until we reverse this and make primary care, well, primary, getting an appointment with your general doctor in the United States will be the Achilles’ heel of medicine. Unless, of course, that heel needs a botox injection.
At TEDMED 2014, Nina Tandon invited us into a world of bio-curiosity, urging us to explore the range of possibilities that come alive when we use biology as a tool to innovate. We got in touch with her to learn more about what inspires her work, and what she hopes to achieve.
“Isn’t it exciting to think that the third industrial revolution could be about life?” – Nina Tandon, TEDMED 2014 [Photo: Jerod Harris]
What advice would you give to other aspiring innovators and entrepreneurs?
I hope they learn that life itself is an entrepreneurial journey – it’s not a mystery! I remember, back in 2008, people kept on asking me if I was worried about finding a job. I told them “I’m not worried about finding a job. I’m worried about the job I’m going to create!” If you think like an entrepreneur, you are never going to be out of work, because you’re always going to be creating. We live in an age when we should always be looking for opportunities, rather than simply waiting for them to be handed to us. Science is evolving. There isn’t a lack of opportunity – it’s just that they now take a different form. They can be public/private partnerships, or academic/industrial partnerships. If you think entrepreneurially, you’ll create your own opportunities.
Who or what has been your main source of inspiration that drives you to innovate?
The body is a miracle that many of us take for granted – I am continually inspired by its magic! I think the thing about the body that I am most fascinated by is that it’s so robust. That robustness is what makes it difficult to study; we’re so busy trying to figure out how to generate data, and we’re looking for linearities within a nonlinear system. Our bodies don’t just have one solution to a problem – there can be tens of them. That’s why, when biology fails, it fails spectacularly.
Why does your talk matter now? What do you hope people learn from your talk?
I hope that people realize that there is huge potential to meet sustainability challenges by viewing biology as a technology partner. We need to take biology off its miraculous pedestal, and ask how it might be possible to utilize it in our work. That’s a powerful question that so many people are beginning to ask, from the most unexpected fields. I want people to realize that biology is breathing into their lives. People should walk around thinking “I might not be a biologist, but I should be because my field is about to be disrupted by it.”
What is the legacy you want your work and/or your talk to leave?
I hope that people will be inspired to care for their own “biological houses” as well as to take action to learn more about science. My hope is that increased appreciation for nature will inspire a new generation of activists and bio-innovators. I don’t want to leave my stamp on anybody. I want people to discover their own legacy, their own beauty and potential. I hope people forget all about me – it should be about them, not me.
Check out Nina’s TEDMED 2014 talk, “Borrowing from Nature’s Living Library”:
This is a guest blog post by Mariana Figueiro, Light and Health Program Director at the Lighting Research Center (LRC) and Associate Professor at Rensselaer Polytechnic Institute. Her talk at TEDMED 2014 reveals, surprising facts about the effect of light – its presence, its absence, and its patterns – on human health.
“We are all swimming in a sea of light” – Mariana Figueiro at TEDMED 2014
All creatures, great and small, are governed by the natural 24-hour, light-dark cycle. Every cell and physiological system in plants and animals exhibits a circadian cycle. In the absence of a regular 24-hour light-dark cycle, a circadian cycle in humans runs with a period close to, but not exactly, 24 hours. Daily exposures to morning light, especially blue light, reset the timing of our biological clock and synchronize our circadian rhythms to the local sunrise and sunset. Disruption of these circadian rhythms resulting from exposure to irregular light-dark patterns or exposure to light at the wrong time of day can compromise health. For example, it has been shown in animal models that circadian disruption is linked to increased risk for diabetes, obesity, cardiovascular disease and even cancer.1-5 Therefore, receiving the right light at the right time can be the key to good sleep, good health and wellbeing. We are swimming in an ocean of light, but like fish that take water for granted, we generally pay little attention to our environmental light. Light is the conductor of our internal symphony, influencing when we sleep and wake, our cognitive abilities, how much we eat, and even how well our medicine works.6-8
Recognizing the impact of light on the individual and on a global scale, the United Nations has proclaimed 2015 as the International Year of Light, citing that light plays a vital role in our daily lives, has revolutionized medicine, and that light-based technologies promote sustainable development and provide solutions to global challenges in energy, education, agriculture and health.
Just last year, the Nobel Prize in Physics was presented to the inventors of the blue LED, Isamu Akasaki, Hiroshi Amano and Shuji Nakamura.
At the Lighting Research Center (LRC) at Rensselaer Polytechnic Institute, we focus on the myriad effects of light on human health at all ages. We are working on developing a lighting system that can be used with premature infant incubators in the NICU to provide cycled lighting, which has been shown to improve health outcomes in premature infants. We are also investigating effective ways to deliver light as a treatment to improve sleep, depression and agitation in Alzheimer patients.
Beyond the long-term health benefits of synchronizing our circadian rhythms to the local time on Earth, light has an acute effect, an alerting boost, like a cup of coffee, which can help give us the energy we need when we wake up in the morning and also help to fight the post-lunch dip. We are trying to figure out how red light impacts alertness and performance during the day and at night. This could benefit shift workers, because red light can increase alertness without affecting melatonin levels. The suppression of melatonin by light at night has been implicated in health problems such as breast cancer in these shift workers.
The newly constructed 24-hour lighting scheme demonstration room at LRC provides cycled electric lighting with cool, high light levels during the day and warm, low levels at night. Construction of the room was made possible through funding and donations from the Light & Health Alliance, led by Dr. Figueiro. Light & Health Alliance members are Acuity Brands, Ketra, OSRAM Sylvania, Philips Lighting, Sharp, and USAI Lighting.
Aside from the special light needs of these select populations, there is every reason to believe that introducing a regular 24-hour pattern of light and dark by modifying the amount of electric lighting we are exposed to daily, could improve the health and productivity of everyone. We are currently looking at the impact of artificial light and natural daylight on the health and wellbeing of federal employees working in buildings owned and leased by the U.S. General Services Administration. To further study this question in the home environment, we are also developing a lighting system that could be incorporated into the design of Swedish homes. The availability of daylight in Sweden during winter months is very limited, and so we are designing a “healthy home” using lighting principles that will promote health and wellbeing not only in Swedish homes, but in other places where daylight availability is limited. The system will provide cycled electric lighting with cool, high light levels during the day and warm, low levels at night. This type of cycled lighting is ideal for circadian health, encouraging restful sleep at night and increased alertness and performance during the day – not to mention many other general health benefits, such as improved mood and reduced risk of diabetes, obesity, cardiovascular disease and cancer.1-5, 9
An important component of the healthy home concept is the “Daysimeter” – a personal circadian light measurement device. The Daysimeter measures how much circadian light an individual receives over a 24-hour period, and then via smartphone it automatically adjusts lighting in the home and office to provide the ideal type of light needed to support health and wellbeing.
Imagine wearing this small, unobtrusive device, that would measure a dark, snowy day in January with little or no circadian-effective light, and then adjust the lighting in the morning to provide cool, high light levels to entrain you to the 24-hour solar day and give you an alerting boost of energy. In the afternoon, light levels would be adjusted based on how much light was received during the day, as measured by the Daysimeter. In the evening, the lighting would automatically adjust to provide warm, low levels of soothing light to ensure restful sleep. Thanks to advances in LED technology, the healthy home of the future could realistically happen in the next decade. We have developed the 24-hour lighting scheme and Daysimeter and have completed extensive testing in the lab and in the field, and are now working to study the real-world effects of this lighting scheme with people living their normal, daily lives. Today, many people think of light as just part of a building. In the future, we believe light will become more personalized, customizable, and tailored to the needs of each individual. Perhaps 2015 is the year that we will see the world in a new light.
References 1. Leproult R, Holmback U and Van Cauter E. Circadian misalignment augments markers of insulin resistance and inflammation, independently of sleep loss. Diabetes. 2014; 63: 1860-9. 2. Ye HH, Jeong JU, Jeon MJ and Sakong J. The association between shift work and the metabolic syndrome in female workers. Annals of Occupational and Environmental Medicine. 2013; 25: 33. 3. Young ME and Bray MS. Potential role for peripheral circadian clock dyssynchrony in the pathogenesis of cardiovascular dysfunction. Sleep Medicine. 2007; 8: 656-67. 4. Maemura K, Takeda N and Nagai R. Circadian rhythms in the CNS and peripheral clock disorders: role of the biological clock in cardiovascular diseases. Journal of Pharmacological Sciences. 2007; 103: 134-8. 5. Schernhammer ES, Laden F, Speizer FE, et al. Rotating night shifts and risk of breast cancer in women participating in the Nurses’ Health Study. Journal of the National Cancer Institute. 2001; 93: 1563-8. 6. Hrushesky W. Circadian timing of cancer chemotherapy. Science. 1985; 228: 73-5. 7. Hrushesky W, Wood P, Levi F, et al. A recent illustration of some essentials of circadian chronotherapy study design. Journal of Clinical Oncology. 2004; 22: 2971-2. 8. Zhang R, Lahens NF, Ballance HI, Hughes ME and Hogenesch JB. A circadian gene expression atlas in mammals: Implications for biology and medicine. Proceedings of the National Academy of Sciences. 2014; 111: 16219-24. 9. Figueiro MG, Plitnick B, Lok A, et al. Tailored lighting intervention improves measures of sleep, depression and agitation in persons with Alzheimer’s disease and related dementia living in long-term care facilities. Clinical Interventions in Aging. 2014; 9: 1527-37.
At TEDMED 2014, Thomas Goetz, health journalist, science writer, and entrepreneur, shared a riveting story about one of the lesser-known heroes of medical research whose successes carried crucial implications for future health discoveries. Curious to learn more, we reached out to him with questions.
“Science is not about that first moment – it’s about the rules and the process that we use to explore ideas.” – Thomas Goetz, TEDMED 2014 [Photo: Jerod Harris]
What motivated you to speak at TEDMED?
I spoke at TEDMED in 2010, and giving that talk had a profound impact on my work and my career. I knew that, given the chance, this was an invitation I couldn’t turn down!
Why does this talk matter now? What impact do you hope the talk will have?
“Innovation” is such a buzzword these days. Everyone wants to be an innovator, every organization feels compelled to be innovative. The word smacks of shiny technologies and slick strategies; it seems almost a facile topic. But innovation – true innovation – is hardly easy. It’s a struggle of ego and conflict and rife with failure. Most of all, it’s hard work.
To me, the story of Robert Koch’s scientific efforts shows that Koch was innovating on two levels at once. The first was science, with the investigations into the germ theory. But, just as difficult was the fact that he had to invent a process. He had to devise a rule set that allowed the pursuit of discovery, what we know now as “in vitro science.” This process, which we take for granted today, is received knowledge. It’s important to recognize that the process is as much a thing as the result of the process. What’s more, we’re in the midst of a new area of innovation today – the idea of “in vitae science,” which I discuss in my talk. My hope is that people will see that creating the rules that govern this new kind of science are as much for the making as the laboratory science of the 19th century. And, it could be just as impactful.
What’s next for you?
At my startup Iodine, we are actively trying to build the rules and technologies that might allow in vitae science to flourish. By giving people a forum to share their medical histories and creating a new dataset that can help drive better decisions for others, we are providing a quantitative assessment of subjective experience. It’s very much continuing what I spoke about at TEDMED, and putting these ideas into real life.
At TEDMED 2014, Amy McGuire, Leon Jaworski Professor of Biomedical Ethics and Director of the Center for Medical Ethics and Health Policy at Baylor College of Medicine, made us think twice about the unintended consequences of getting our genomes sequenced. We reached out to her learn more.
“You all know this, but it is worth stating the obvious: genomic sequencing is not an infallible prophecy of our future.” – Amy McGuire [Photo by Jerod Harris, TEDMED 2014]
What motivated you to speak at TEDMED?
I have seen many TED and TEDMED talks over the years, and have always found them to be incredibly thought-provoking and inspiring. To be honest, at first I was a bit intimidated to give a TEDMED talk. I questioned whether my story was worth telling to such a large audience, and I worried about stepping outside my comfort zone of a typical academic lecture to explore the more personal and humanistic side of my work. However, I feel very passionately about how our ability to learn increasingly more about our biological make-up through new genomic technologies influences how we think about the more existential question of who we really are. Giving a TEDMED talk allowed me to explore this question for myself and, I hope, to initiate a more public dialogue on this topic.
Why does this talk matter now? What impact do you hope the talk will have?
A complete draft of the human genome was published less than 15 years ago. It took 13 years and $3 billion to complete the Human Genome Project. Today, individuals can have their genome sequenced for just a few thousand dollars. For many, genome sequencing can provide important information to help diagnose and treat disease. Others are interested in having their genome sequenced because they want to know their future risk of disease. As genome sequencing becomes more widely available, individuals will need to make informed decisions about whether or not they want this information. I hope that this talk will help others understand the benefits and limitation of genomic sequencing and help make more reflective and informed decisions about obtaining their own genomic information.
What kind of meaningful or surprising connections did you make at TEDMED?
The most meaningful connection I made at TEDMED was with a delegate whose children are suffering from a rare undiagnosed genetic condition. They are very sick and she had been talking to researchers and physicians all over the United States about trying to get their genomes sequenced. After hearing my talk, she sought my help and I was able to connect her with my colleagues at Baylor College of Medicine who agreed to sequence her children’s genomes. While talking with her, it became clear just how difficult the diagnostic odyssey with her children has been. I am not sure if the genome sequencing will provide her with the answers she is looking for, but it meant a lot to me to hear her story and to be able to help her make the connections she was looking for.
by Betsy Nabel, President of Brigham and Women’s Hospital and Harvard Medical School professor.
Knowledge in science is something we never fully grasp because it is continually reshaped by new information. Information – such as the fact that women and men are different, from cells to selves – doesn’t change. Information is bounded in certainty. But we are at a particular disadvantage when the information that serves as the foundation of our limited knowledge is itself shaky. In the case of women’s health, myth and misinformation have been rampant and deadly.
“Humility is the secret ingredient that unveils truth.” Women’s health leader Betsy Nabel at TEDMED 2014. [Photo: Sandy Huffaker for TEDMED].
No myth has been more pernicious, or has cost as many lives, as the one that might easily have killed a patient of my own. It was 1983, and I was a young, hotshot cardiology resident, who of course, “knew everything.” One night, a 32-year-old woman arrived in the emergency room where I worked. She described vague symptoms: aches, fatigue, a low-grade fever – nothing terribly specific. I ran some tests, didn’t find anything telling, and sent her home with Tylenol. Two days later she came back with a full-blown heart attack.
The problem was, I knew that was impossible. I had been trained by the best, and the best had taught me what the best had taught them: Heart disease was a man’s disease, and the primary symptom of heart attacks was chest pain, which my patient did not have.
Thank goodness, that woman survived. Her case has driven my career-long commitment to understand the difference between men and women’s health, and to raise awareness of women’s heart health in particular. Today we know not merely that women die of heart attacks, but, crucially, that women experience an entirely different profile of symptoms than men do.
In that case, we simply didn’t know what we were certain we did know. The same was true of a second myth that scarred women’s health for quite some time: that hormone replacement therapy improved women’s health. The model was simple: as women enter menopause, estrogen levels drop, and health problems ensue. The solution seemed intuitive and logical: replace the estrogen.
For years, the medical community relied on dogma — received knowledge — that these treatments worked. Two in five menopausal or post-menopausal women received hormone replacement, in part to prevent heart disease.
But then scientists challenged the known, by putting this “knowledge” to the test. A multiyear, multimillion-dollar study by the National Institutes of Health – the Women’s Health Initiative (which is the brainchild of then-NIH Director Dr. Bernadette Healy) – examined more than 160,000 women and made a startling discovery. Not only did hormone replacement therapy not prevent heart disease; it actually caused it.
That visionary study — undertaken, significantly, by the public sector at sustained public expense — has saved countless women’s lives.
Today, a third myth is killing women, and this one remains enshrouded in misinformation. Just like we used to think heart disease was a man’s disease, today we think of breast cancer as the most important women’s cancer. Of course, in many ways it is. But lung cancer kills more women than any other cancer — nearly 200 every day, most within a year of diagnosis.
Yet, perhaps because of the stigma associated with lung cancer stemming from an inaccurate perception that the only way to get lung cancer is to smoke – which is especially wrong when it comes to women — research in this disease is chronically under-funded, especially measured by the harm it causes to individuals and families.
Women who have never smoked appear to be at greater risk of developing lung cancer than men who have never smoked. Of the 20,000-25,000 nonsmokers diagnosed with the disease each year, more than 60 percent are women. Women also develop lung cancer at an earlier age than men. Yet, unlike breast and prostate cancer, for example, there is no widely accepted screening test for lung cancer.
Lung cancer thus presents a double myth: first, that it is solely a smoker’s disease; and second, that it is a cancer women don’t need to worry about.
These myths are a compelling reminder of the need for researchers and clinicians alike to treat men and women as what common sense tells us they are: different. That means clinical trials need to impose a gender lens at every stage of discovery and explore the unique effects of diseases and therapies on women as well as on men, which will lead to better health for both sexes.
An oft-shunned word, ignorance, carries great importance when we consider it as the driver of scientific inquiry, and thus, the molder of new knowledge. Yet when myths are widely believed to be facts, ignorance can kill. We owe half the world’s population much more than that.
Elizabeth Nabel, the President of Brigham and Women’s Hospital and a professor at Harvard Medical School, shared a personally revealing story on the TEDMED stage that pointed to how the limits of knowledge can be a weakness and how accepting our ignorance can be a strength. We are honored she has written an original piece for the TEDMED blog.