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The TEDMED Great Challenges Program

Examined Lives: On World Lupus Day, one patient’s story about life with a mysterious disease

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By Tiffany Marie Peterson

This February 20th was my third-year anniversary of being diagnosed with lupus.

I have had joint problems since I was little. But in January of 2010 I lost my grandmother to throat cancer and shortly afterwards my symptoms because so severe I couldn’t move out of the bed. It took me about a month to be properly diagnosed. I was first diagnosed with rheumatic arthritis, but my general practitioner (GP) is so hands-on; he referred me to a rheumatologist right away so I wasn’t misdiagnosed for long.

Lupus is such a mysterious disease. One moment its not active at all, and the next moment completely active. I could be having symptoms like swollen achy joints or chronic fatigue without any warning. There are so many “ifs.” You never know how your day is going to go until it ends and you never know what what’s coming down the pike.

Putting a Team Together

When you have lupus, you have to manage multiple care providers, including nephrologists, GPS, and a rheumatologist.  I’m on my third rheumatologist now, because the first two wouldn’t let me an empowered patient. That means that you’re enabled and educated, and you know how to take part in your own care. I just started seeing my new rheumatologist that I have only seen a couple of times. I finally found a rheumatologist who was willing to sit down and work with me and not at me. It took me about two years to get this team together.

I’m on a drug that may cause eyesight issues, so I also have an opthamologist. I have to see a psychotherapist and a psychiatrist – lupus itself causes depression – so each month I have about six doctors’ appointments minimum.

Technology Helps Communications

I first go diagnosed my rheumatologist wasn’t open to sharing my medical files, so when it came to making decisions she didn’t care about what I had to say. Now, I have a patient portal that allows me to send my GP e-mail, so I can email him whenever something’s up, and he can get in contact with the other doctors.

I don’t know if many patients have patient portals, but it helps me a lot.  The fact that I can just email my doctor is wonderful, because when you call the office you almost never get the doctor.  But when I email my GP, he responds within a day or two.

Of course, you also have to have a copy of your own health records to share when necessary. It’s so important. I tell my lupus brothers and sisters, make sure you always have your own health records with you.

Still, it’s not like I can look at my charts online.  All of my records are paper records.  I have no idea why I can’t get them electronically. Or diagnosing or medications. Even my GP will still use a book to find out whether or not medicines will clash, and I’m like, ‘Can’t you go online and find out whether that’s happening?’

I usually use a health app, CareCoach. It helps me prepare for my visits so I can write down all the questions I have to my doctors. It also helps me record all my doctors’ visits, so I can just play back my experience and get the information I need.

It does make me feel more in control, and definitely more hopeful. It’s a good feeling when everyone is on the same page and all of your doctors are working towards the same goal.  It definitely feels more empowering, and it gives me hope that I’ll have a better outcome.

On Insurance Hassles

There was a huge hurdle in getting health insurance. I couldn’t afford it.  I’m listed as permanently disabled, so managing my healthcare is a lot more straightforward, but there are still some hurdles. I have so many doctors appointments and it all adds up, especially when it comes to medical billing. Every single time the mail comes I get a new bill, so I’m always busy getting through all that.

In the Hospital

There is so much that happened to me in the past six months. I had a hospital stay recently. I had a urinary tract infection that went straight to my bloodstream and caused all of my organs to shut down, so because of that I had to have a blood transfusion.

I went to many different hospitals during my recent visit.  I have a family hospital, which is in the Bronx, but prior to that I was in two other different facilities that did not work with me. They weren’t practicing participatory medicine, where the patient is at the head of the table in their own care. They worked hard at my family hospital to follow my wishes and to work closely with my care team.

Finding a Patient Network

One thing I would tell other Lupus patients: Don’t be shy to ask your doctor questions.  A lot of us can get intimidated when we go into the doctor’s office, because maybe the doctor’s bedside manner is not that great.

Maybe the single biggest step a patient with chronic illness can take is talking to other patients. Lupus patients are always talking to each other online to help us manage our care teams. It’s like, ‘We’ve discussed the issues with each other, now let’s go talk to the doctor.’

I feel like social media in itself has been really helpful in managing my own care, because there are so many patients out here who are veterans and have been managing this disease for 20 years and more. That’s how I found my first mentor, my first year with lupus, and now she’s one of my great friends. She’s been one of my close mentors ever since.

Tiffany Peterson

Tiffany Peterson

 

Tiffany Marie Peterson blogs at www.tiffanyandlupus.com. Follow her on Twitter @tiffanyandlupus.

TEDMED and GWU Host First Great Challenges Day

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The 20 Great Challenges of Health and Medicine are tough to understand, let alone to grapple with, and there has never been a large gathering specifically devoted to using storytelling to understand and to plot out some potential solutions to them.

But for the first time at TEDMED, a special afternoon session was entirely devoted to the Great Challenges. Therefore, a diverse coalition of some 500 experts, patients and TEDMED delegates came together today to do just that.

Group discussion of Inventing Wellness Programs that Work. Photo: Jerod Harris/TEDMED

Great Challenges Day, hosted by George Washington University and made possible by the Robert Wood Johnson Foundation, kicked off with a plea to recognize the inherent value stories that lie behind the data. Randy Olson, scientist-turned filmmaker, opened the session by explaining the “And…But…Therefore” storytelling technique, as seen above, which working groups for each challenge will use to frame their conversations.

The Story Collider embodies the spirit of storytelling for science. where people are invited to tell stories of their personal experience of science. Ben Lillie, a particle scientist with and comedian, founded Collider because he believes every single person has a story about how science affected them on a deep, emotional level.  He talked about the “why” of storytelling and why personal narratives can be so powerful in illustrating issues. His own story: A ‘heart attack’ he thought he suffered at the age of 23, which turned out to be a panic attack wholly caused by the stress of studying particle physics.

Primed in the spirit of telling stories to save lives, 20 challenge teams of around 25 participants each then gathered for a bit of “viral community-building” and some hands-on exploration and discovery. The discussion was lively, both on Twitter, in the rooms, and with graphics by Discovery Doodles. We also asked some participants to describe their Challenge in six words.

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TEDMED Partners Draw on Innovative Technologies and Innate Knowledge to Move Fields Forward

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The Hive at TEDMED 2013 is designed to be a petri dish for innovation, both the kind that flows from new technologies — a Hubble telescope to examine your eyes, anyone? — and that which emerges from insight and cross-disciplinary collaboration.

“There’s nothing more complex than the brain,” said Husseini Manji, M.D., Global Head of Neuroscience for Johnson & Johnson (J&J), which created a Hive space dedicated to exploring diseases of the brain. Manji shared some of the challenges of treating brain diseases. Alzheimers, for example, is 100 percent incurable and 100 percent fatal. With a rapidly aging population, “this will be catastrophic, unless we can learn how to slow or prevent its progression,” Manji says. On the other end of the age spectrum, Manji calls mental illnesses such as schizophrenia and severe depression “a chronic disease of the young,” because they usually emerge in a person’s early 20′s and stay with them their entire life.

Part of the goal of the space is to raise awareness that mental illnesses are a result of neurochemistry. “Asking someone with severe depression to be more positive and exercise and just feel better is like asking someone with diabetes to make their pancreas work better,” Manji said.

Photo: Jerod Harris/TEDMED

The space showcases a 3D brain model that demonstrates brain activity in the form of electric signals in different parts of the brain, as affected by Alzheimer’s, mood disorders, schizophrenia, and chronic pain. Glove simulators, special glasses and a headset that makes it hard to hear help give participants a window into a patient’s experience of dementia.

J&J’s space also features early research on treating age-related macular degeneration, a disease that is currently incurable. Macular degeneration is the leading cause of blindness in adults age 50 and older in the developed world. New retinal imaging techniques draw on technology used in the Hubble Telescope, and could allow physicians to view the eye in such minute detail that they can see individual cells in the back of the eye. That technology, coupled with new non-invasive delivery techniques to deposit stem cells where they can replace previously damaged cells, have been tested on about 30 patients so far, and some 30 and 40 percent of these patients exhibited significant vision improvements that lasted for more than a year, in an early clinical trial.

Not that we can let our guards down. Chrispin Kambili, Global Medical Affairs Leader for Infectious Diseases at Janssen (a subsidiary of J&J), shared the history of tuberculosis (TB), which was nearly eradicated in the U.S. by the 1960′s. In the next decade, the United States was so optimistic about the decline in rates that it was decided to stop funding TB control programs. But then TB came back in a big way in the 1980s. “The AIDs epidemic, migration patterns, antibiotic resistance and the dismantling of the public health infrastructure” meant the country (and New York City in particular) was unable to deal with resurgence, which peaked in 1992, Kambili says. Since then, the rates in the United States have been reduced back down to levels where citizens will likely never know someone affected by TB again.

But the same cannot be said of developing countries. “Every 20 seconds someone dies of TB, though it’s a very treatable and in fact preventable disease,” said Kambili. “But what’s lacking is access to care, which has been difficult to implement on a global scale.” Another challenge is multi-drug resistance, which happens over time when patients aren’t treated in sufficient doses and bacteria evolves to resist common treatments. It’s a challenge, though, to get patients to get sufficient doses when they have to take medication for 18-24 months, and side effects include nausea, vomiting and even deafness. Janssen has developed a new drug, bedaquiline or SirturoTM, that studies show killed bacteria more quickly than a control group taking the standard regimen. FDA gave it accelerated approval in December.

Photo: Jerod Harris/TEDMED

Booz Allen Hamilton’s space leverages potential of a different kind — innate knowledge, insight and experience. That’s the motivation behind “design thinking,” an art and a process that attempts to gain deep insights into a person or a group’s unmet needs through an ethnographic approach to discovery. True design thinking involves having a user population keep journals, allowing researchers to observe and analyze everyday tasks and more. TEDMED Delegates will have the chance to be a part of a small-scale version of this process, as the “design thinkers” on site probe visitors with the question: “What does health mean to you?”

The key principals in the design thinking effort include: “Be empathetic. Put yourself in someone else’s shoes,” said Joe Garcia; and “Reframe the problem from a different lens,” said Patricia Kwong, both of Booz Allen. Kwong offers the example of the problem of MRI machines that were terrifying to pediatric patients. To help develop a solution, physicians put on a pair of knee pads, crouched down to kid-height, and looked at the machine from a child’s point of view. Only then did they come up with the idea to transform the hulk of the MRI machine into a significantly more inviting pirate ship.

Interestingly, the themes emerging from the design thinking discussions at TEDMED so far echo several of the 20 Great Challenges of health and medicine, including the role of the patient and managing chronic disease.

Progress achieved in the Great Challenges since last year’s conference catalyzed conversation in the Robert Wood Johnson Foundation (RWJF) space. After eight months of Google Hangouts, a robust online discussion, and carefully curated Storify collations, the entire TEDMED community has the opportunity to weigh in on where we go from here to conquer the 20 Great Challenges.

At the Whole Patient Care station, Challenge team member Blaire Sadler, Senior Fellow at the Institute for Healthcare Improvement, spoke with visitors about how the sub-specialization of medicine has led to each physician treating only an illness or body part, which results in a lack of care coordination and alienated patients. Sadler and his collaborators also wondered about the ideal environment in which a person can heal: “Why does a patient room have to be scary, austere and hospital-like? Why can’t it be home-like, peaceful and include art and music for positive distractions?”

Maybe one of the most interesting things about the RWJF space was the cross-sector dialogue it facilitated. For example, Suzanne Mintz, President/Co-founder at National Family Caregivers Association, stopped by the Causes of Sleep Deprivation station to share her take on why sleep is such a challenge for those who “can’t shut their heads off… when people are on high alert, it’s hard to come down,” noting that caregivers often are high on stress in addition to having additional responsibilities at night to care for a sick loved one.

Examined Lives: Why healing health starts with racial equity

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By Gail Christopher

At the time my three-month old baby died, I could think of nothing but our family’s sorrow. We had lost a dear, beautiful child. What can you do but grieve?

It was only later that I realized that I was a statistic.

In fact, as I looked back, I could recall a number of early deaths in my community. When I was 15, my best friend’s mother was rushed to the hospital before she was due. It was a shock to us all when she died during delivery. This was, we thought, a healthy woman.

Then I remembered my parents’ best friends. The couple had a daughter named Alicia. Alicia also died during childbirth, along with her baby.

What was going on here? Why were these maternal and infant losses so prevalent in families of color?

I made the decision to do something to change these statistics, and began pursuing a career as a holistic doctor.

As I would come to learn, there were gross inequities between whites and African-Americans in birth and maternal health outcomes.

When I graduated from naturopathic medical school in the mid-1970s, I set up a private practice in Chicago. At the same time, I established a company that worked with social service agencies to deliver holistic wellness and well-being services to underserved communities.

Gail Christopher

We focused on getting women to eat healthfully, to get exercise, to manage stress. They did the things that are key in the holistic healing world. And these women began having healthy babies.

It actually became a joke in our community. Women referred to me as “the fertility doctor,” because I saw so many who were expecting, or who couldn’t get pregnant, or who had had babies and lost them. Of course, I wasn’t a fertility doctor. I was making sure that they got the whole health care they needed. Healthy pregnancies followed.

So this was my work: Helping women, children and families become healthier. Helping communities understand and improve disparities in outcomes. Helping reshape the statistics.

And yet I also knew that truly eliminating these differences in outcomes would mean dealing with something much bigger.

To genuinely eradicate health disparities—as a nation—we have to confront the undergirding dynamics that contribute to them. That means addressing African-Americans’ continued exposure to discrimination and lack of opportunity.

That’s hard work: structurally, politically, emotionally.

Challenging the dynamics of discrimination means reaching back through deeply entrenched roots and history. It means reconfiguring the DNA of this country’s belief system.

At a "Save Our School" rally in Cleveland, Ohio, high school junior Gail C. Christopher addresses her classmates as they convene to save their high school from demolition.

For hundreds of years, that belief system has held that it is OK for people to be valued differently based on physical characteristics. We have never as a country dealt with that belief.

Of course, we’ve had a civil war and a civil rights movement—but those dealt with the consequences of that belief rather than the belief itself. We’ve also known that race is a social, rather than biological, construct. But simply pronouncing something false is not dealing with it.

Today, at the W.K. Kellogg Foundation, we’ve put a priority on achieving racial healing and racial equity in this country. This work specifically and openly challenges the historical belief in racial hierarchy.

At the same time, we also work to to equip people with the innate and external resources to mitigate the effects of that historical belief.

It’s a both-and approach.

Dealing with it requires intentional strategies.

Let’s imagine a young boy growing up in a community much like the one where I used to practice. It’s an impoverished neighborhood. He’s enrolled in a failing school system. He’s harassed by police. And he or may not have the benefit of two parents or an extended family.

This child is continually exposed to overwhelming stress responses, something Dr. Jack Shonkoff at Harvard University calls “childhood adversity.” Childhood adversity is a predictive factor in all manner of chronic diseases later in life. And so we see our long racial history playing out across the health of individuals and particular communities from a very young age.

For this boy, and for his children, we have to tackle both the current situation and the historical context.

At the bare minimum, he needs balanced nutrition and social support to cope with the vicissitudes of his body’s adaptation to the stressful environment. People need optimal food for optimal health. The W.K. Kellogg Foundation funds organizations working to improve access to fresh, healthy affordable food for vulnerable children.

Dr. Gail Christopher, with her children Heather and Hassan.

At the same time, we also fund organizations working to acknowledge and dismantle structural racism—the policies and practices that continue to create barriers for children of color.

Which takes us to an evolution of my earlier question: How do we address the early death so prevalent in families of color?

Addressing these health inequities demands that we address inequality more broadly. We must create an environment that supports equity and opportunity while mitigating the effects and consequences of exposure to discrimination.

In other words, I realized that to change the statistics—to change the conditions that resulted in so much premature death in my community growing up—we must bring a racial healing and racial equity lens to our nation’s health discussion.

Until we do, we’re just putting Band-Aids on the hemorrhage.

Click here to read more about the Great Challenge of the impact of poverty on health.

Call for participants: Be a part of the story at TEDMED Great Challenges Day

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Are you obsessed with the future of personalized medicine? Or perhaps its the unfolding advances in technology to improve the management of chronic disease that motivates you each morning? Do you tweet constantly about innovations in health? If you answered yes to any of these questions, then you might be a perfect match for our never-before-done-opportunity.

The TEDMED Great Challenges program is inviting social media users to apply for credentials to attend its first ever Great Challenges Day at George Washington University on April 19th.

A maximum of 20 social media users will be credentialed to attend the event and will be given the same access as news media and bloggers in an effort to align the experience of social media representatives with those of traditional media.

TEDMED social media accreditation for Great Challenges Day opens at Noon EDT Thursday, March 21st and the deadline to apply is 5:00 p.m. EDT Tuesday March 26th. All social media accreditation applications will be considered on a case-by-case basis. Those receiving TEDMED Great Challenges social media credentials will have the opportunity to:

  • Participate in the final morning of TEDMED 2013 at the Kennedy Center in Washington, DC
  • Participate in the first ever TEDMED Great Challenges Day at George Washington University in Washington, DC (Note: Transportation will be available between the Kennedy Center and the campus, and maps are available for walking between the sites)
  • Serve a critical role in sharing the discussions and discoveries from key speakers and breakout room dialogs throughout Great Challenges Day
  • Meet and interact with representatives from TEDMED and the TEDMED community of global thought leaders
  • Meet fellow health and medicine enthusiasts
  • Publish one (1) post, with byline attribution and author feature, on the TEDMED Blog
To Apply: Please make sure to review the details below and then submit your application to be a part of TEDMED Great Challenges Day.

What does it mean to be a part of TEDMED Great Challenges Day?
New to the Great Challenges Program in 2013 is Great Challenges Day, which features the opportunity for you, as an avid social media user, to become a piece of the story. As a member, you will receive access to TEDMED 2013, the Hive, and Great Challenges Day on Friday April 19, 2013 (only). You will receive social media credentials and placement within a Great Challenge delegation for Great Challenges Day.

Social media credentials give users a chance to apply for the same access as journalists in an effort to align the access and experience of social media representatives with those of traditional media. People who actively collect, report, analyze and disseminate news on social networking platforms are encouraged to apply for media credentials. Selection is not random. All social media accreditation applications will be considered on a case-by-case basis. Those chosen must prove through the application and registration process they meet specific engagement criteria.

Great Challenge delegates will meet as a team during Great Challenges Day for a workshop dialog on the pressing issues related to one specific challenge, identifying its untold narrative through a series of activities related to the storytelling of science. Placement within a Great Challenge delegation provides members with the opportunity to share their connection to the Great Challenges program, provide knowledgable reflections on the topics, and facilitate the global community – providing the insights of the social media community within each Great Challenges dialog.

To join us at Great Challenges Day for this opportunity, you must have proven expertise on social media and demonstrate interest in furthering the critical discussions within health and medicine. Participants will share their experience through live tweeting speakers and sharing updates on social media. They will also have the opportunity to work with the editorial team at TEDMED to submit a blog post for blog.tedmed.com, with byline attribution and author spotlight.

How do I register?
Registration opens at Noon EDT on Thursday March 21st and closes at 5:00 p.m. EDT on Tuesday March 26th. The registration link will be shared on TEDMED’s Twitter, Facebook, and Google+ accounts at that time. All social media accreditation applications will be considered on a case-by-case basis.

Do I need to have a social media account to register?
Yes. This event is designed for people who:

  • Actively use multiple social networking platforms (Twitter, Google+, Facebook, others) and tools to disseminate information to a unique audience
  • Demonstrate an advanced, sophisticated awareness of social media engagement
  • Regularly produce new content that features multimedia elements.
  • Have the potential to reach a large number of people using digital platforms.
  • Reach a unique audience, separate and distinctive from traditional news media and/or TEDMED audiences.
  • Must have an established history of posting content on social media platforms.
  • Have previous postings that are highly visible, respected and widely recognized.

Users on all social networks are encouraged to use the hashtag #GreatChallenges. Updates and information about the event will be shared on Twitter via @TEDMED and via posts to Facebook and Google+.

What are the registration requirements?
Registration indicates your intent to travel to the Kennedy Center and George Washington University in Washington, DC and attend the one-day event in person. You are responsible for your own expenses for travel, accommodations, food and other amenities.

TEDMED will provide breakfast and lunch on Friday, April 19th. At both the Kennedy Center and the University, TEDMED Great Challenges will provide a wi-fi login.

Some events and participants scheduled to appear at the event are subject to change without notice. TEDMED and TEDMED Great Challenges are not responsible for loss or damage incurred as a result of attending. TEDMED and TEDMED Great Challenges, moreover, are not responsible for loss or damage incurred if the event is cancelled with limited or no notice. Please plan accordingly.

Those who are selected will need to complete an additional registration step. To be admitted and pick up your credentials, you will need to show a government-issued identification (with a photo) that match the name provided on the registration. Those without proper identification cannot be admitted. All registrants must be at least 18 years old.

Does my registration include a guest?
Because of space limitations, you may not bring a guest. Each registration provides a place for one person only (you) and is non-transferable. Each individual wishing to attend must register separately.

What if I cannot come to Washington, DC?
If you cannot come to Washington, DC to attend in person, or you are unable to attend for the full day on April 19th, you should not register for TEDMED Great Challenges social media credentialing. You can follow the conversation using the #GreatChallenges and #TEDMED hashtags on Twitter.

When will I know if I am selected?
After registrations have been received and processed, an notification email will be sent out to inform you whether or not you have been selected for TEDMED Great Challenges social media accreditation. Those selected will be required to complete an additional step before being accredited. We will send notifications upon approval.

If you do not make the registration list for accreditation, you can still participate in the conversation online by following @TEDMED, #TEDMED, and #GreatChallenges.

Does registration for and/or attendance at this TEDMED Great Challenges with social media accreditation qualify me for media accreditation for future events?
No, your registration and/or attendance, does not qualify you for news media credentials at TEDMED or TEDMED Great Challenges now or in the future.

TEDMED strongly encourages all potential applicants to be familiar with the Great Challenges of Health and Medicine prior to completing their application.

Examined Lives: The tale of the bungled biopsy

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By Margaret Brunner*

In December, I went to Starsen Radiology* for my annual mammogram. They called me at the end of the month. They said I needed to come back immediately for another mammogram because they had found a suspicious mass in my right breast. So I went in that day for another mammo. They definitely saw something, and said I needed to get a biopsy done ASAP, and could perform it, f I wanted.

Of course, I panicked.  I called my Ob-Gyn to see what she had to say. The Gyn office said that Starsen* did biopsies all the time, and that it would be okay to schedule it with them. I called and set the appointment for January 7th. I’ll never forget the date.

The big day arrived and I went to Starsen for the biopsy.  I was nervous as heck. I’d never had this done before, so I didn’t know what to expect.  There were two nurses there to help me prep. Then the doctor came in to explain the procedure and had me sign a paper, of course.

The procedure, called stereotactic biopsy, was pretty painful – they said there would be “some discomfort.” They gave me a local anesthetic, but it was never enough.  Boy, was I glad when it was over.  They told me that they would send the tissue sample to the pathology department in a local hospital and that it would take about one to two days to get the results back.

The waiting was the worst part.  You start to think about horrible possibilities.  Starsen never gave me an idea of how many biopsies show a malignancy, though I did find out from another breast center that 80% turn out to be benign. I’ve been relatively healthy all my life.  So, when I got the call that I would need a biopsy, I was very worried. I kept on thinking, “What if do have breast cancer?  How am I going to tell my kids? I haven’t done so many things that I still would like to do.”

This then led me to develop hives, which happens when I’m psychologically stressed.  On day two, I called Starsen to see if they had the pathology report. Nothing yet.  Day three, still nothing.  Day four, nothing.  Day five, nothing.  Imagine my fears growing and my hives getting worse.  Day six: Starsen had finally gotten the pathology report back. It was benign!  Hallelujah!  I was so happy.

Fast forward to a week later. I get a call from Starsen, who tell me that they took a sample of the wrong area.  Are you kidding?? I couldn’t believe it.  When they mentioned risks before the procedure, they mentioned infection. They did say they might not get the right sample, but that it was very unlikely. Not only did I have to endure the pain of the procedure and many days of waiting for the pathology report, I now found out that they got the wrong area. I never found out why, and another radiologist told me the news – not the one who had done the procedure. They tried to make me go to them for another biopsy.  I declined.  I didn’t pay anything for that procedure out of my pocket – I guess insurance picked up the tab.

I wasn’t sure what I should do.  Should I see a surgeon?  I got a few names in my area. Then I talked to someone in my town and found out about a breast surgeon in Manhattan. Apparently, many women in this area have gone to see her and she is well regarded in the field. I wanted to see someone who really knew about breast issues.  I finally got to see her on February 6th.  Because the mass was so far back in the breast, she recommended another stereotactic biopsy, instead of surgically getting a sample of the suspicious mass.  But she said she wanted the radiologists at her location do the biopsy. That was fine with me.  I loved the breast surgeon.  She was a kind doctor.

On February 12th, I went in for my biopsy.  What a different experience.  There were two nurses there for my procedure, but they really “held my hand” to tell me what was going on and what they needed to do during the procedure.  I really liked that aspect.  I also got to meet the two radiologists who were working on my case.  They introduced themselves to me beforehand and told me what to expect during the procedure.  And they gave me their phone number in case I had questions.

After the procedure, the radiologist got another image to make sure they got the right area. The radiologist in New Jersey hadn’t bothered with that.  I loved the radiologist who performed the biopsy.  She kept asking how I was feeling. Although she gave me a lot of lidocaine, I still felt quite a painful tug and pull during the process.

They sent the sample to their pathology group and said to expect the report within 24-48 hours.  After my last experience, I was very skeptical about getting it that soon.  I was ready to wait six days again.  But boy, was I wrong.  The pathology report came back incredibly quickly – 24 hours!  And happily, it was benign!

If I had to do it over again, I would have found a doctor that other women have seen and speak highly of.  I would asked my friends right away to see if they knew of a good doctor.  Telling my friends also helped relieve the stress of worrying about whether I had cancer. My friends are truly one my pillars of strength.

*Names have been changed to protect privacy.

Visit TEDMED’s Great Challenges website to discuss how to eliminate medical errors.

What’s your definition of stress?

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This guest post is by Benjamin Miller, PsyD, Director of the Office of Integrated Healthcare Research and Policy at the University of Colorado School of Medicine.

Stress. You’ve experienced it. Chances are, even as you read this blog, you are in the process of experiencing it. No, not that reading blogs is inherently stressful, but rather because we live in a society that is go, go, go. We move at breakneck speed always aware of the next deadline we must meet or the next place we must be. We are a society on the move. What happens when too much “need to” starts to wear on us? What happens when we start to feel a bit overwhelmed like we just can’t take on one more thing? How do we respond?

Well, rest assured, you are not alone. According to the American Psychological Association’s 2012 “Stress in America” survey:

  • Americans report their mean stress level as a 4.9 on a 10-point scale where 1 means “little or no stress” and 10 means “a great deal of stress,” while they define a healthy level of stress as a 3.6 on the same scale. Twenty percent of Americans report stress levels that are extreme (an 8, 9 or 10 on a 10-point scale).
  • The most commonly reported significant sources of stress include money (69 percent), work (65 percent), the economy (61 percent), family responsibilities (57 percent), relationships (56 percent), family health problems (52 percent) and personal health concerns (51 percent).
  • Only 17 percent of those with high stress say that they are doing an excellent or very good job of managing their stress, compared with 59 percent of those with low stress and 37 percent of Americans nationwide.

These data help shine a light on an often dark corner in healthcare – the role of stress. Before we dive any deeper on the topic, let’s define what we are talking about here. According to Merriam-Webster, there are no fewer than six different definitions of stress.

Rather than pick one of these definitions, I would like to propose a more simple definition for us to consider – stress is change. When you read through all the various definitions of stress in the dictionary it becomes quite clear that whether good or bad, stress is something happening to us within our environment.

With this definition in hand, let’s begin to consider how stress plays a role within health and healthcare. Like many things in healthcare, we try to separate out stress; we try to isolate it as its own entity when in reality this could not be further from the truth. You see, stress, whether you identify it or not, is having an impact on your health. For example, over thirty years of research examining the effects stress on cardiovascular health have suggested:

  • Chronic stress related to work and/or one’s personal life is associated with a 40-50% increased likelihood of coronary heart disease.
  • Those already diagnosed with coronary heart disease have poorer prognoses if they have more work-related stress and social isolation.
  • Increased risk of heart disease is now thought to be due to repeated and long-term stress on autonomic and inflammatory processes.
  • This persistent long-term stress in the workplace, in particular, has been found to impact health and has been characterized as both 1) high psychological demands such as multiple responsibilities with high productivity demands, and 2) low personal control and restricted ability to make decisions.

The costs of stress to you, the consumer, and to the healthcare system are exorbitant:

  • Over $300 billion is spent in legal and insurance costs, and reduced productivity, absenteeism and turnover due to job stress.
  • Healthcare spending was 46% higher for workers with high levels of stress.
  • An estimated $2 trillion in annual healthcare costs are due to the management of chronic diseases, which are largely contributed by chronic stress.

Now, consider that we have novel ways to treat stress.

Meditation for stress reduction programs are demonstrating long-term health improvements. In a recent five-year study examining Transcendental Meditation, participants experienced a 48% decreased risk of stroke, heart attack, and death, as well as reductions in blood pressure, stress and anger.

Laughter and learning to take yourself less seriously are approaches that are also receiving more attention for reducing stress and improving health. Humor is known to release endorphins, those feel-good neurochemicals, and reduce circulation of stress hormones. Laughter Yoga Clubs, which combine laughter and yogic breathing, are becoming more popular at companies and colleges worldwide.

More generally, positive thinking is thought to improve immune function and coping with pain, and reduce incidence of depression and overall distress.

“How stressed are you today?”

I remember once working in a primary care practice where every patient was asked the same question: “On a scale of zero to ten, how stressed are you today?”

The answers were always telling, and would in some ways predict how the rest of the visit would go. For example, if a patient said:

“Well, you know I have been feeling a lot of deadlines at work recently. I just haven’t been able to relax as much as I used to. These deadlines have kept me out of the gym, too, which is one way I always fought off my stress. Right now, I would say I am a 7 out of 10.”

With a patient like this, it was fairly obvious that they knew what the stressor was, knew possible solutions on how to manage it, and saw the entire issue pretty clearly. Other patients, on the other hand, were not as insightful.

“On a scale of zero to ten, how stressed are you today?”

The patient, calm, cool, and collective, would look at you straight in the eye and say “zero”. It was during these moments that you knew something was really going on; because, let’s be honest, who has no stress in their life? How do you manage change in your life? How do you identify “stress”?

Follow Ben Miller @miller7, and watch him moderate our Great Challenges live event about  coping with the health effects of stress on Thursday, March 14th at 1pmET.

Visionaries: Elissa Epel on why toxic stress is public health enemy #1

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Elissa Epel

TEDMED 2011 speaker Elissa Epel, a UCSF psychologist, has studied the health impacts of stress, from its effects on our DNA to its relationship to overeating, for two decades.

Q Some of your research has centered on the way that stress hormones contribute to increasing our drive to eat, particularly high-carbohydrate and high-fat “comfort foods.” To what degree is stress contributing to our national obesity crisis, in your opinion?

EE We can’t quantify exactly how big of a role stress plays. It could be huge. It’s invisible and it’s easy to ignore; it’s pervasive. Most of us have gotten so used to living in a matrix of stress – time pressure, demands, rushed social interactions, rushed eating – that we don’t even notice it. So we might not realize how stressed our body really is. But the effects of stress can still stimulate our appetite, and shift us to choosing more ‘white food’ – what we call “comfort food,” – high-calorie, high-fat food. This promotes metabolic disease because it causes us to store calories in the visceral area and liver. And that stored fat is at the core of many chronic diseases, not just diabetes.

Q I was surprised to see your study showing educational attainment is also related to telomere length. What might the mechanisms for that be?

EE That relationship is multi-layered and needs to be unpacked. One common theme in trying to understand health disparities is testing whether part of it stems from  greater stress exposure or reactivity over a lifetime. For example, the effects of more years of education early in life can be seen decades later, in longer telomere length. Higher education, or maybe it’s the quality of education, can create an infrastructure in the brain for more adaptive coping – it can help with strengthening what we call ‘executive function’ –which helps us think clearly under stress.

Conversely, there are many active ingredients in the milieu of low socioeconomic status that cause wear and tear. Interestingly, though, perception can play a large role here. We have measured this by giving people a picture of a ladder and asking them to place themselves on a rung (the bottom rung being the lowest status).  Rating oneself as low, regardless of actual income or education, relates to poor adaptation to stress.  Specifically, when given the same task to do in the lab, people low on the ladder reacted hotly each time, as if it were new, instead of habituating to it. There is also the built environment of low socioeconomic status, which doesn’t leave opportunities for buying healthy food and places for exercise or safe walking. And the built environment can feed back and affect how people feel.  For example, fewer parks or more liquor stores predict a decreased feeling of neighborhood trust and cooperation.

Q There seems to be a big disconnect between what people know is good for their health, and their actual behaviors. Is mindfulness – focusing on what we’re doing right now, in the present moment – the missing link, do you think?

EE I think that’s right on. We can’t possibly regulate our behavior and feelings, and suppress those pesky but strong impulses and other distractors, if we are not paying attention. In a high-stress environment, our brain activity shifts toward the limbic system and the emotional stress response, and away from the parts of the pre-frontal cortex that house executive control systems, the rational and analytical drivers of our behavior. So we react automatically and impulsively when we are under stress and not paying full attention.

Watch: The Mindful Human Genome

And even if we are focusing a lot of effort on eating better or exercising, but in a really self-critical way, this can sabotage our efforts as well. Very few people meet their exercise, sleep, and nutrition goals each day. So mindful attention includes both an intention and a kind attitude, and these help clear our mind of unhelpful or intrusive thoughts, and improve our ability to carry out our intentions.

Eating is an interesting example of a behavior that is not under our full conscious control, although we have not admitted that yet. Eating is something that we can do without paying attention. Otherwise, if it took focus and effort, that wouldn’t be part of adaptive evolution. Overeating is related to stress but also altered neurobiology of the reward system, the source of our strongest motivational drives. This reward area responds to palatable food. This can drive compulsive behavior that feels out of control, an experience similar to being a drug addict for some people. We have to better understand how powerful certain types of foods can be, and that certain conditions, including stress, make people especially susceptible.

In some of our studies, we are trying to help low-income people who feel very little control over their life, with their weight. We are teaching mindfulness to pregnant women, and it looks like the training might be helping not only them but also their babies. We have to think of ‘stress reduction’ where it matters most – which includes the womb. Prenatal stress exposure can affect a child’s health for a long time, possibly a lifetime. For example, mothers who have experienced major stresses while pregnant have offspring with shorter telomeres.

Dr. Elissa Epel : The Science of Stress

Q One of many intriguing facts you mentioned in your TEDMED 2011 talk was that technology can actually increase stress in various ways. At the same time, we’re seeing a slew of new apps aimed at helping us to calm down.

EE I think mobile apps for stress reduction are a fabulous potential use of technology, if they really work. For example, we could be using our mobile phones to remind us to rejoin with the moment, and to breathe fully, to notice our physical body and become embodied again. We live mired in our thoughts, above the neck, and this is made worse by multitasking.

But technology devices can become part of multitasking, thus adding to the strain on our limited attention, splitting it yet one more way. There are a lot of wellness apps out there, but I also think that we need data. Almost none of them are evaluated so although they seem promising, do people really benefit from them in a way that would lead to meaningful change? This is a powerful way to reach people, and I admit that even I am involved in an effort to test a stress reduction app!

There are so many answerable questions: Can we take people deeper into a meaningful life, or do these technology interventions contribute to fractured attention and more shallow social interactions? Do people stick with them? Do the apps make a dent in chronic stress arousal over time? As a society we desperately need stress reduction. Let’s hope we can use technology to get there.

Q If you had the power to enforce one public health measure based on your research, what would it be?

EE Public policy makers try to use their resources well to help people, but don’t always think about how to make policy motivating to an individual, nor take into account fundamental causes of societal and individual stress. Stress is caused by a perception of lack of control and unpredictability. Policymakers can promote empowerment, helping disadvantaged people gain a sense of control over their daily life.  Social scientists understand which social and structural factors need to change to help individuals change.

A main message of research today, from epigenetics in basic models to epidemiology, is that adult health is shaped early in life, in important ways we can no longer ignore. So resources are best spent early in life, with the goal of promoting good health and habits, and preventing disease. Good quality education is critical, particularly for girls. It directly translates to better health behaviors and eventually health for the next generation. Resources are just much less effective when applied to diseases that are incurable and costly to manage. Our money is spent in an unbalanced and illogical way. We skimp on education — particularly in California — and spend a tremendous amount of money and time trying to cure incurable diseases such as obesity. Instead, we spend big money on bariatric surgery and costly band-aid procedures.

Q Has your research changed any of your own personal or work habits?

EE It has, but only in an incremental way over many years. I have been studying the field of stress for almost 20 years, so I know all too well what we should be doing, and how my behaviors such as curtailing sleep and having too many demands placed on me affects my daily physiology, and cellular stress. Does that mean I get enough sleep, exercise, meditate every day, keep work manageable, and prioritize the things that are most meaningful, versus the most urgent? No. I am closer to that than I used to be, and maybe in another stage of life… I still experience plenty of challenging situations, and have my reactions, but now in a more mindful way, and that is a qualitatively different experience. Like most people, I am a work in progress.

–Interview by Stacy Lu

 

The dementia tsunami is headed your way

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A Guest Post by Amy Goyer

Anyone who has ever encountered someone who has dementia, much less been involved in the intense care for or a loved one with the wretched disease, has three thoughts that permeate his or her mind:

  • First, pleading: “Please, please don’t let it happen to me…and if it does let there be a cure.“
  • Second, reality: “Who will care for me if I do develop dementia?”
  • Third, fear: “How am I going to amass enough money to pay for my care?”

I was first a caregiver for my grandmother who had dementia and now for my Dad, who lives with Alzheimer’s disease, a common form of dementia. I have these thoughts on a daily basis, and I know I’m not alone: 25 million people are projected to develop dementia by the year 2050 unless we find ways to prevent, treat and cure it.

Who will care for these people? What will be the personal, medical and economic impacts of this surge?

Recently, I participated in a TEDMED Google+ hangout chat about the dementia tsunami headed our way. I was encouraged by the robust discussion of these and other key questions by experts, doctors, researchers, service providers and caregivers. Not because there were answers to all of these questions, but simply because the discussion was taking place.

Those of us who work in the field of aging have been riding our virtual horses through the night shouting, “The boomers are coming! The boomers are coming – and they’re bringing dementia!” for many years. Some in the medical community have also been sounding the alarm. In fact, it’s not only the boomers. By 2050, Gen Xers and even Generation Y will be in dementia range.

Now, by shining a light in the darkness on this critical issue, TEDMED is helping to create the only thing that will really change the course of the dementia tsunami: public demand. We must, as a society, reach that “I’m mad as hell and I’m not putting up with it anymore” stage that creates an overwhelming energetic shift. That shift is what it takes to increase research and treatment options for dementia, as well as affordable care for those who have it and support for those of us who take care of them.

Experts in the Google+ hangout shared their perspectives and some key issues in the chat:

  • About 1 in 8 older Americans have Alzheimer’s disease now (one form of dementia).
  • At this time, some medications and treatments can slow certain types of dementia for some people, but nothing stops it. Nothing. There is no cure.
  • The National Institutes of Health spends only about $500 million a year on dementia research – much less than other diseases.
  • Less than 1% of nurses, physicians assistants and pharmacists are trained in geriatrics, yet 26% of their patients are geriatric. There is a dearth of geriatrician physicians (geriatricians) as well. There are simply not enough medical professionals who are trained in dealing with the diseases of old age (including dementia) and the necessary unique treatments and approaches for this population to meet the demand.
  • Family caregivers are bearing the bulk of the burden of care and will do so increasingly in the future – many without connections to resources and supports that are in place. Caregivers for those with dementia have higher rates of depression and other health problems themselves. More funding for training and supporting family caregivers is needed.
  • More people need to participate in dementia research – but caregivers of those who suffer from it are generally so exhausted and overwhelmed we often can’t get it together to register our loved ones or ourselves to participate in research.

Amy Goyer with her parents.

From my perspective as a primary caregiver for both of my parents who live with me, a full-time worker, and an individual who probably has a strong likelihood of developing dementia myself some day, I could feel horrifically hopeless. What keeps me from falling into the abyss of fear? Taking action. I choose to do something about all of this; I do my part in creating that necessary energetic shift.

I do so personally, by making the necessary sacrifices in my life so that I can ensure my parents are getting the best possible care and by taking a relentless approach to doing my homework, asking questions of their health care professionals, leaving no stone unturned when it comes to possible treatment for dementia and their other illnesses. I also honestly share my own personal caregiving experiences in my blog and other forums. Professionally, I take action by raising awareness and helping other caregivers – in particular through my work with AARP and the Ad Council as a spokesperson for their caregiving campaign. We are working hard to connect caregivers with much needed supports through the AARP Caregiving Resource Center. It’s a big job and it will only get bigger.

Whether you are a doctor, researcher, lawyer, nurse, family caregiver or an individual who doesn’t want to get dementia – do something. Keep the discussion going. It’s better than sitting back and waiting for the flood. In the TEDMED chat, expert leaders and participants all agreed on one thing: we must advocate for those with dementia – they can’t advocate for themselves. I might add that, truth be told, when we advocate for prevention, treatment and a cure for dementia, we are actually advocating for ourselves too. The tsunami is coming, and you never know if you will be in its path.

I look forward to more pointed and hopeful discussion about caregiving and dementia at the TEDMED event in Washington, DC coming up April 16-19.

Follow Amy @amygoyer and on Facebook.

 

 

Examined Lives: A younger face of dementia

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My mother was diagnosed with frontal lobe dementia at the age of 63. Cause: unknown. The symptoms crept up over years, in retrospect, but really got our attention following surgery to repair a broken wrist. Mom became moody and withdrawn. She had trouble speaking in complete sentences. She baked a cake and forgot the sugar. When driving, she felt compelled to pass whomever was in front of her — a white-knuckle experience for her passengers, particularly on a highway.

Photo: Gordon Donovan

Later, though, she had more falls and began to walk with slow, birdlike steps, suggesting another fiendish disease at work. She was undiagnosed for quite a while, until her thoughtful gerontologist looked between the lines and found she had progressive supranuclear palsy (PSP), a neurodegenerative disease. Eventually, she would become completely rigid, and, at the end, lose her ability to swallow. Her dementia was one of the symptoms that particularly unlucky PSP patients face.

It didn’t manifest in forgetfulness.  Rather, it was a series of behaviors that were off kilter at best and painfully embarrassing – and dangerous – at worst. Like wandering off holding my three-year-old at Disneyworld, swallowed by the enormous crowd as I frantically tried to follow.  Eating off of a stranger’s plate at a nearby table while waiting for her dinner at the local tavern.  Opening the passenger door on a highway.

Mom’s dementia was an especially startling, as she had previously been so capable in so many fundamental ways. She was a wizard with numbers and a top-performing saleswoman. She could wallpaper a room flawlessly.  She sewed elaborate prom dresses, and stuffed animals and quilts that she donated to children’s hospitals. She grew and canned her own vegetables and baked, decorated and transported an elegant, three-tiered wedding cake for my cousin’s wedding. On her first trip outside the U.S., she made her way alone around Paris, not knowing the language, including a long Metro trip to return a train ticket.  She got the refund. Then she drove us to Belgium – in a stick shift, of course.

Mom in 2009, one month before her diagnosis.

Because she looked even younger than her age, and was otherwise healthy and fit, save for the blankness in her brown eyes, people she encountered were often taken aback by her behavior. But I was humbled by the kindness and humanity we encountered, especially once when Mom reached over and grabbed a pair of socks from a woman’s hands at a clothing store.  The woman leaned over to me and whispered, “My dad was like that.  I know. God bless you.”

She was able to express humor and love the longest.  One day, two gents at the nursing home had a little shouting match, all up in each other’s faces – typical guy stuff, even though one was strapped to an oxygen tank and the other wobbled precariously behind a walker. Everyone in common area could hear their salvos:

“You talkin’ to me?”

“Yeah, you.  I don’t like the way you look.”

“Well, I’m sick of your shit, too.”

“Get up!  I’ll show you what for!”

I turned to see Mom soundlessly giggling.  Our eyes met.  Recognition.

And whenever I told her I loved her, her response came back, clear as a bell: “I love you, too, sweetheart.”

There was a lot that worked for us in the healthcare system.  I was lucky to be able to take her to the one of the world’s top PSP specialists, Lawrence Golbe, who carefully examined Mom and gently confirmed the diagnosis.  But much of our help came from outside the system. My parents had life insurance that kicked in when mom entered hospice and helped defray the enormous costs of nursing home care, which long-term care ombudsmen helped us find.  Lawyers helped us have the necessary paperwork in place, which in turn spurred necessary talks about hard decisions; a friend who is a neurologist had given me frank advice as to what was in store for Mom. The CurePSP Foundation publishes information about the disease and organizes online discussions and local support groups.  Knowledgeable and caring hospice nurses – brought in by our private nursing home – provided continuity and were our mainstay during those final weeks.

Dementia robs its victims of their chance to share their stories. But early on, I asked my mother for permission to tell hers, and she agreed. Like most patients I’ve interviewed, she wanted to help others, especially those who might follow in her unsteady footsteps.

By Stacy Lu

Join TEDMED’s online live discussion with experts on the Great Challenge of our epidemic of dementia this Thursday at 1pm ET.