How risky is it, anyway?

These days, science can tell us in incredible detail the ways our decisions are impacting our health – it’s easier than ever to discover what is going on in our bodies. We know that a poor diet or lack of exercise can have negative impacts on our heart health. We know that too much sun exposure can lead to skin cancer. We even know how diseases spread – and how they don’t. But, in the face of all of this information, we still continue to make decisions that may not be the best for our health.

In other words, many medical professionals are dismayed by the large gap between risk as perceived by scientists, and risk as perceived by the population as a whole.

As an example of this gap, some doctors and scientists point to the country’s reaction to Ebola. Though the average American is more at risk for flu, a car accident, obesity, diabetes, or heart disease than Ebola, the entry of the disease into the U.S. has brought a high level of fear. This prompts the question: How can the medical community accurately and responsibly communicate risk in a way that encourages healthy choices?

Last week, as part of the Great Challenges program, we convened a group of experts on the topic. They discussed the psychology behind risk perception and talked about strategies and tools that the medical community can use to ensure that patients receive an accurate understanding of their risks and are encouraged to act accordingly. The event was moderated by James Maskell, CEO and Founder of Revive Primary Care.

The participants all agreed that our reactions to risk are often driven by feelings before facts – and that the low level of health literacy in this country doesn’t help. Brian Zikmund-Fisher, PhD, an Associate Professor of Health Behavior & Health Education at the University of Michigan School of Public Health, noted that other elements of human risk perception include our experience (or those of others), our knowledge, our level of control, and our level of dread. He stressed the importance of understanding risk as a population-level construct.

Glyn Elwyn, MBBCH, MSC, FRCGP, PhD, a physician-researcher, Professor and Senior Scientist at the Dartmouth Health Care Delivery Science Center and the Dartmouth Institute for Health Policy and Clinical Practice, posed a key question: “How do we frame information so that it’s easy to understand?” The group agreed that risk perception is largely about context; they stressed the importance of using language and tools to create this context – which is not always statistics. Brian shared his thoughts on the subject: “how can we give people the tools so that they can understand under what circumstances they would be at risk, and when they’re not at risk? We need to use stories to represent examples and also provide quantitative information.”

Thomas Workman, PhD, MA, the Principal Communication Researcher and Evaluator for the Health and Social Development Program at the American Institutes for Research (AIR), had one suggestion: asking patients to think about how they would feel if the health condition for which the patient is at risk occurred. He called for patient involvement in the development of these tools, asking, “How can we incorporate patients into the development of some of these tools and technologies?”

Participants emphasized the importance of the clinical encounter in creating this context. At the same time, the short time for each office visit was a concern. Thomas noted that “The conversation with the physician is just as important as the conversation with the community.” He suggested that risk and prevention discussions can take place with organizations within the community – or even within small family units. David Bell, MD, MPH, an Assistant Professor of Population and Family Health at the Columbia University Medical Center, echoed this sentiment. He stressed the need for risk information to come from a trusted source.

The participants also recognized that the media plays an important role in framing the public’s risk perception. We live in a world where we are confronted with sensationalized news daily. Glyn pointed to the low trust in public information plus dread as a “toxic mix that the media are ventilating,” while Thomas asked: “How can we create more balanced messages?” Brian noted that while individual stories may make interesting news stories, they “will never be representative of the broader range of what could possibly occur.”

On the whole, the participants concurred that, as David put it, “Every step of the way patients get different messages about their risk and we all need to be on the same page.” A tall order, of course, but one which may lead to more realistic understandings of risk – and consequently, it is hoped, the adoption of healthier behaviors.

If you missed the live event, catch the recast here: www.tedmed.com/greatchallenges/liveevent/494673, and stay tuned for our next Great Challenges hangout on Achieving Medical Innovation later this month!

Public Health’s Work on Infectious Diseases

Infectious diseases—and the treatment of infectious diseases—has been a common theme in the news recently, with almost 4,000 people now dead from an Ebola outbreak in West Africa. It was only yesterday that Thomas Eric Duncan, the first person to be diagnosed with Ebola in the United States, died in a Dallas, Texas, hospital.

Earlier this week, some of the leading experts in infectious disease came together in the Google Hangout “TEDMED Great Challenges: Track, Treat, Prevent—A Better Battle Against Communicable Diseases.” They discussed the risk of communication, treatment, drug resistance, disease tracking innovation and related ethical issues. The event was moderated by Helen Branswell of the Canadian Press.

The panelists—across the board—agreed that the recent Ebola resurgence has served to highlight the importance of public health. Not just what it brings to the table during such emergencies, but the need for it to focus even more on prevention efforts and ensuring public health is fully funded and supported.

“Public health funding is one of those things people only really notice when something goes wrong,” said Dara Lieberman, a Senior Government Relations Manager at Trust for America’s Health.

Amy L. Fairchild, PhD, MPH, Professor of Sociomedical Sciences at the Columbia University Mailman School of Public Health, believes that “in many ways, we’ve really lost our way in public health.”

“There was a period at the end of the 19th/beginning of the 20th century in which the field made these enormous strides in combating infectious diseases and combating communicable disease,” Fairchild said. “And then, with the rise of chronic diseases, we began to forget some of those…lessons learned about the need to focus on broad, sweeping environmental changes.”

Public health became focused on individual risk behaviors, she said, such as diet, exercise and smoking. The result was many in the field took their eyes off of the fundamental causes of disease.

“It’s not that those things aren’t important,” Fairchild said. “But the things that we’re going to be able to do as individuals are going to be far less consequential than what we can do from a more systematic perspective in public health.”

Ramanan Laxminarayan, a Research Scholar at the Princeton Environmental Institute at Princeton University, said the outbreak of something as serious as Ebola also serves to stress the importance of continuing to implement proven public health strategies, such as vaccinations for preventable disease.

“Even if disease burden is low, we need to keep the pressure on because it is that pressure that actually keeps infectious disease low,” said Laxminarayan. “If we stop vaccinating the world against measles today, for instance, it is very easy for measles to come back in a relatively susceptible population which is lacking immunity—and an explosive disease like that could kill millions.”

However, when it comes to diseases such as measles—which is one of many infectious diseases that have been declared eliminated in the United States—it can be difficult to communicate the need to continue receiving vaccinations.

“Prevention is going to be challenging because the consequences of prevention are not always obvious or apparent to folks who’ve never even seen that disease in their lifetimes,” said Laxminarayan.

Also, a considerable part of the role of public health professionals when responding to an infectious disease outbreak is managing the public’s reaction and understanding. Lieberman said that includes balancing the needs of those affected with the need to contain a situation.

“I think public health in general takes privacy and individual rights very seriously. At the same time, you just need to balance that with the practical need to protect the public from an infectious disease and from a highly dangerous disease,” said Lieberman. “So you can imagine if public health never knew who the individual was in Dallas, Texas. If that was just a privately treated person and public health didn’t get involved, then they wouldn’t have been able to investigate where he has been and who he’d had contact with. And it could have become a much wider spread outbreak (sic), so there is a need to weigh those two issues.”

When it comes to panic during an outbreak, Fairchild believes that it’s important to understand that panic can also bring about positive reactions.

“Panic is the language of action. When you hear panic in the air, you hear people talking about the need to take action,” said Fairchild. “And so it’s either a prompt to do something more—to beef up the infrastructure in West Africa, to beef up the response in the United States—or it’s a critique. It’s a critique we aren’t doing enough.”

One tactic that has been proven to be a boon for public health efforts has been the online tracking of people’s interest in, and concern over, different health issues. According to Christian Stefansen, a researcher at Google, today when a person is feeling “under the weather” their first action taken is often to log online, where they search for information about their symptoms. In 2008, Google launched Google Flu Trends, which continually looks at what people are searching for online and builds health model than can help public health experts get out in front of an issue.

Reprinted with permission from the Robert Wood Johnson Foundation’s New Public Health blog.

The positives of HIV testing: A tale of two cultures

Last week, we hosted a live online discussion about essential community building blocks for breaking the links between poverty and poor health outcomes. And the need to think creatively is perhaps strongest in local HIV/AIDS prevention initiatives. Cultural pressures, health myths, and access issues can hamper engagement and progress and yet, two campaigns are making strides.

The Many “Reasons” to Get Checked

Putting a positive spin on HIV testing for young men at high risk for the disease may be a daunting task, but culturally poignant messages may go a long way towards selling the value of getting checked.

Manuel Rodriguez manages the “Reasons” program for the non-profit development strategy organization FHI 360.  Reasons is a messaging campaign that aims to get Latino men who have sex with men to undergo testing for the HIV virus.  It comprises social media outreach, print, t.v. and online advertisements, and presence at gay pride events, and currently focuses on cities with many members of the target population, including Miami, Los Angeles and New York.

 

“We all have a reason for getting HIV tested,” the ads say, including words like love, life, family and pride.

Rodriguez says Reasons aims to touch on the strong sense of community in the Latino culture, which holds whether one is a first-generation immigrant or has lived in the U.S. for decades (Rodriguez was born in Caracas,Venezuela.).

“We incorporate family and friends, and the importance of protecting your partner. Mom is a very big figure in Latino culture, so some of the messages are, ‘I’ll do it for my mom to make sure I’m going to be there for her,” Rodriguez says.

Another hallmark of the effort is its positive, not punishing, slant.

“We see this as a new way to communicate because it comes from a positive and empowerment framework, instead of, ‘You must do this, because you do that.’ It’s more of a value-driven proposal.  ‘You can control it.  You can prevent it.’

“As a person, your value as a member of a family and your community is health. To be there for them is to take control of your health,” he says.

Rodriguez says impact of the year-old program is measured so far in the millions of online website views and by a big bump in social media interactions since the program launched. The program has conducted strategic online listening activities to fine-tune campaign messages. Some findings include that some Latino gay and bisexual men see testing as the right thing to do, and they go as far as to share Instagrams of their test results as a badge of honor — negative results, because a positive test result still carries a stigma in Latino culture; one that Rodriguez has worked to mitigate throughout his career in public health communication.

Though Reasons has a defined target audience, Rodriguez says that its themes may turn out to be not so specific after all:

“We think at the end of all these Pride events and local mobilization, we’re going to have a story to tell. And we’re going to find out that these will be universal themes that unite us all.”

Taking Pride in Resilience

Another FHI360-managed program, Testing Makes You Stronger, is aimed at African-American men with male partners. According to Cornelius Baker, Acting Director of the HIV/AIDS Unit, Testing reflects a common ethos in the black community of ‘that which doesn’t kill you, makes you stronger.’

“It’s the messages one gets by growing up in an African American family; that of resilience, that you can survive through tough things,” Baker says. “It’s also very much that sense of pride, of having a respect of agency for the community.  People want to live well; they want to survive.  What we have to do is create an environment of support for that, and give people the tools to be able to benefit themselves,” he says.

Baker says his organization gathered input from community leaders, advocates and the Testing target audience — more than 400 black men in five cities — before embarking on the campaign.  There is also a campaign for African-American women, Take Charge: Take the Test.

Both programs are funded by the Centers of Disease Control and Prevention, which also lends its scientific and technical expertise to governments and agencies worldwide to help stop the spread of HIV.  (For more on how global health strategies are applied locally, join TEDMED’s special World Health Day Google Hangout on April 7.)

Preventing childhood obesity: It’s never too early to start

What’s the best way to prevent children from becoming obese?

While theories abound, one thing we’ve learned so far: It’s never too early to start.  A New England Journal of Medicine study last week showed that children who are overweight in kindergarten are much more likely to become obese teenagers. Other recent research suggests risks begin in the womb, and include a mother’s weight gain, blood sugar levels and smoking habits.  Risks may even stretch back generations; the great-grandchildren of a group of rats exposed to DDT had higher levels of fat and weight gain than progeny of those not exposed.

TEDMED 2013 speaker Peter Attia, an MD who conducts what his organization, NuSI, considers the most comprehensive research on the causes of diet-related diseases to date in adults, says that factors likely to trigger children to become overweight in the first place may indeed be present at birth, and are tough to surmount.

Does a typical school lunch contribute to food-related diseases?

Does a typical school lunch contribute to food-related diseases?

“Genetic factors aren’t as likely to explain changes over relatively short periods of time. The epigenetic factors – genetic factors turned on by environmental triggers – may have a lot to do with a mother’s eating behaviors while a child is in utero.  [Studies so far] certainly suggest that the quality of a mother’s diet plays a role in a child’s susceptibility to obesity and insulin resistance,” Attia says.

And these influences are only likely to grow along with a child, he says.

“There’s a whole host of systems and structures that got that child to be where they are; they’re probably related to socioeconomic status, education, and what the child consumed for the first five years of his or her life. All of those factors aren’t going to go away,” Attia says.

Communities are scrambling to catch up, and many are looking at the school environment as a logical start point. In TEDMED’s Google+ Hangout last week, Great Challenges team members and special guests discussed measures schools are taking to educate kids about good nutrition and ensure that they receive it on school premises. They include efforts to help schools procure locally grown fresh food for cafeteria lunches; on-site gardens where children harvest and study the science of food; and nutrition education and cooking classes. (Watch a video of the insights shared here.)

Will these interventions happen quickly and go far enough? Attia has hypothesized that foods high in sugar — juice, soda, candy bars, sugary cereals, and sauces — are prime culprits of diet-related illnesses like type 2 diabetes and fatty liver disease.  And right now they’re commonly available in cafeterias and on school property.

The fast rise of these ills in children – as many as seven million cases of fatty liver disease in the U.S. – should be a wake-up call that vast changes are needed, starting with improved medical research on their causes, Attia says.

“Do we honestly want to continue reiterating the same dogma for the next 30 years that says ‘Just eat less and exercise more, and if you have the right moral fortitude you’ll be fine?’

“It’s been a scientific and policy failure in adults. All you have to do is look back when the mantra started, and look at how many people were obese, and how many had type 2 diabetes, and follow through on the amount of spending that’s gone to propagating that message, and compare that to the numbers today,” he says.

What’s happening to kids also reinforces what Attia expressed in his TEDMED talk:  That we mistakenly attribute obesity and its related diseases to a failure of personal responsibility.

“ ‘People who are obese and diabetic are morally corrupt.’ We don’t come out and say that, but that’s the implication. ‘These are bad people. These are lazy people who lack discipline.’

“But do we really believe that children are morally bankrupt, lazy, slothful entities who just choose to be gluttonous?  We have a hard time believing that for a five-year-old,” he says.

- Stacy Lu

Examined Lives: The Wooden Box

By Barry J. Jacobs

On a scorching day at my step-father’s graveside, I stood slightly outside the circle of 20 mourners, present but distant. In my hands, strange to me, was the wooden box.  I wasn’t thinking about its contents of bone cinders and fine ash but of the surprising coolness to the touch of its dark mahogany veneer and polished brass latch.  I listened impassively to my step-sister’s tearful remembrances of her party-boy father and to her cousin’s choked sobs recalling her favorite, most loving uncle. I had promised myself–especially during his decline from dementia–that I wouldn’t speak at his funeral on his behalf. So I stood watching in silence now, holding tight to his box of cremains.

wooden_boxAt the time he married my mother when I was 17, he had little interest in me or use for my impudence. For my part, I hated his sullenness when sober and boisterous prejudices when drunk—so unlike my deceased father. We learned to give each other wide berth, maintaining a tepid cordiality punctuated by infrequent clashes. This worked for over 30 years until he started losing his mind. Because I am my mother’s son and a clinician specializing in treating families dealing with illness, I felt it was my duty to assist my mother with the caregiving. That brought me into greater contact with not only him but many difficult feelings. Like many caregivers before me with a history of bad family relationships, I felt with fresh intensity the old resentment I held for the man I was now committed to helping.

In his last three years, I moved my step-father and mother up from Florida to live in an apartment a mile from me and my family. I went about the enervating business of seeing them several times a week for meals and doctor’s appointments. I visited him (irregularly) after he was placed in a nursing home. To deal with caring for someone I’d long detested, I had to shut off all of my feelings. I had to be rigidly self-contained, keeping up the polished veneer of the grimly resolute caregiver to coolly carry out my joyless caregiving efficiently. On the outside, I myself became a kind of wooden box. Inside, though, I felt empty of purpose and energy at times. I burned with anger, at other times, towards the hostile man he’d been and the vexing burden he’d become.

This was exactly what I always counsel family caregiver clients to strive to prevent—to not lose one’s self during caregiving, to not turn wooden and callous just to keep difficult emotions in check. But it seemed so much easier to completely shut off. What possibility could there be for resolving my past feelings with this vague, addled man in life or death? Yet even as I stood there silently on that July day, I felt a bit chagrined. I was in a responsible enough position at this auspicious moment to closely grip his box. Yet, dreamy in the hot sun, I held myself as far away from the unfolding scene as my psyche would allow.

And then someone suddenly whisked the wooden box from my hands and nestled it into the shallow, open grave. Others cried; I was too shut off to react. As part of the Jewish funeral ritual, a line formed to shovel dirt over the box but I stood there in a daze. I finally snapped to attention when I saw my 17-year-old son grab the long-handled spade. If he could do religious duty for a step-grandfather he hardly knew, so could I. I got into line and went through the motions of helping bury my step-father.

But though his ashes went underground, I didn’t entirely bury him. For too long, I did too good a job of shutting off and not processing what I felt. Six months after his death, I haven’t shaken all the woodenness. Hard as I try to come to terms with my relationship with him and put him to rest and myself at ease, I still find the box sealed. I’ve wound up carrying its weight and burden still. My hands still tightly embrace it.

jacobscrozerphoto

 

Barry J. Jacobs, Psy.D. is a clinical psychologist and the Director of Behavioral Sciences for the Crozer-Keystone Family Medicine Residency Program in Springfield, PA. A TEDMED Great Challenges Team Member for The Caregiving Crisis, he is the author of “The Emotional Survival Guide for Caregivers—Looking After Yourself and Your Family While Helping an Aging Parent” (2006, Guilford) and the forthcoming “Caregiving Family Stories & Beliefs,” a collection of 25 of his previously published essays and case stories on families and illness.

This post originally appeared on the Collaborative Family Healthcare Association’s Families & Health Blog.

Examined Lives: A teenager’s long journey to mental health

By Alexa Ellenthal

My whole life it has been apparent that I am different. Some would even say that something is wrong with me.

I was a weird kid (I was highly precocious and inquisitive to the point that it was obnoxious) and my parents started taking me to a variety of specialists, mostly psychologists, and getting me tested when I was about six. At first the diagnosis was ADHD. The doctors and my parents started medicating me for it. Then they realized I had a mood disorder, too, and put me on pills for that. I remember my near-daily tantrums in first grade. I remember feeling like a zombie for most of second grade. All through elementary school they were putting me on different medication cocktails, taking me from doctor to doctor, hoping by some magic the pills would make me a normal kid or one of the doctors would be able to understand me.

shutterstock_53312143When I was nine I had my first major depressive episode. I was being severely bullied and it really got to me. I also developed insomnia. I would stay up late into the night crying, not even being sure why I was so upset. That’s when “mood disorder not otherwise specified” (MDNOS) morphed into depression in my medical records. The problem was that I was feeling impossibly sad and hollow and unmotivated, and because I was so young, I couldn’t always relay what I was experiencing in a way others could understand. That’s the problem  doctors have to try to diagnose patients based on introspective ramblings, symptoms, observations, but they only really know what their patients tell them and even then, they don’t know anything for a fact because patients might lie or omit some key details.

I was a difficult child, and not a particularly trusting one. I didn’t just open up to strangers who were being paid to listen to me and decide how to deal with me. I also didn’t understand why it was so important to talk to them. So they guessed at my condition, putting me on meds that zapped my emotions, or that made me either severely under  or significantly overweight. It was confusing and overwhelming, and by the end of middle school I’d been through at least a dozen doctors and probably just as many medicines. It’s so hard to find not only a good doctor, but also a doctor you click with. Especially as a young child, when most of them condescend to you, and even if you point out to them that you’re young, not stupid, they’ve still got you drawing pie charts of your emotions and playing with miniature Zen gardens.

-1I had developed severe body image issues due to med-induced weight fluctuations and my self-esteem was frighteningly low due to the bullying I endured daily, as I had been since kindergarten. Elementary school aged children are like lemmings; if one walks off the cliff, the rest follow; and if one picks on the bossy, weird, nerdy girl then the rest do the same. I started reading a lot of books about eating disorders and visiting websites like sixbillionsecrets and learning about self-injury and other such horrors. When high school rolled around, I got really stressed and my own practices of self-injury began. I used thumbtacks and paper clips to hurt myself, and I starved and binged and tried to purge but nothing ever came up. Things got worse.

The real depression hit, though, around late fall of my sophomore year in high school. I was seeing a psychologist whom I liked, but I never let her see how bad of a place I was in. She threw in a couple more diagnoses to my ever-expanding list: Anxiety and obsessive-compulsive disorder (OCD). As a nervous compulsion, I started pinching my skin, leaving ugly, moon-shaped scabs and scars. I started missing a lot of school and trying to lose myself into other worlds and lives, sleeping a lot (for the dreams) and reading a lot of love stories (for the happy endings) and watching a lot of emotional TV shows (to feel something). My grades slipped and so did my façade of happiness. My peers began to notice that something wasn’t right with me, my friends were always asking what was wrong, and my parents, who had been under the impression that I was recovered, started noticing my symptoms.

Then it all started again, with going from doctor to doctor and pill to pill. My parents had me see this one awful woman who I’m quite sure truly hated me and tried to say I was bipolar, called me manipulative, said I was faking and said my mom was stupid for believing me and a bad parent. It was a psychiatric horror story. Going into junior year of high school I was beyond stressed and self-harming pretty badly; my eating habits were totally screwed up and I was positively miserable. I didn’t want to exist. As the holiday season set in, suicide weighed on my mind more and more.

Then, one Friday night in mid-December, I arrived at a friend’s house only to be greeted with the news that a boy I had been friends with two years prior had died. He had killed himself. In the wake of his death there was utter devastation. I saw what a suicide did to a family, to a community, to the friends of the deceased. I chose to live. I didn’t think the world could afford to lose us both. I went to a psychiatric hospital a month later for my depression and self-harm. I kept the eating disorder to myself. The hospital brought in guest speakers  former patients who had recovered and begun living happily, and they had us do a lot of art therapy. We went to the gym every day and sometimes there was animal therapy, where they brought dogs in for us to pet and play with. We also set recovery daily goals and discussed whether or not we were successful at the end of each day. Since being discharged, I’ve been in therapy two to three times per week. I have started dialectical behavioral therapy, which I find immensely helpful. I finally have medications that work for me. I do group therapy, which is awesome.

But then, on the first day of school this year, a sophomore killed himself. I realized that the problem was bigger than me, and bigger than Henry. It is a challenge that so many people face. It is something that so many people suffer through silently. They’re ashamed of their illness due to the stigma that society attaches to being mentally ill, or their family rejects the idea that they could be sick because they perceive that as something being wrong with the person.

According to the National Institute of Mental Health, more than one in four adults suffer from some sort of mental illness. And many people can’t get the help the need and deserve, due to the shame put upon those of us who need this sort of help, as well as the exorbitant cost of mental healthcare. I want to change that. I want people to understand what it’s like to be mentally ill or bullied and I want the people who are suffering to know how far from alone they are. I still want all of that. That’s why I started You Never Know Who, an online community for kids struggling with mental illness. That’s why I’m writing my novel, which is about a 16-year-old girl trying to recover from a major depressive episode while struggling with several other disorders. The main character is based off of not only my own experiences, but also those of the many girls and young women I interviewed about their struggles. I want to educate people about the reality of mental illness. I want the mentally ill to know that there’s nothing wrong with who they are and they aren’t alone. I want people to move on from their struggles the way I’m moving on from mine.

Alexa Ellenthal will be a guest at TEDMED’s Great Challenges Google+ Hangout this Wednesday, December 18 at 2:00 pm EST.  Join us to discuss how mental health treatment is being integrated into primary care.

Live Online Event: Prescribing treatment in patient context

Mr. Hypothetical visits the doctor for an ailment. His doctor’s diagnosis is spot-on, the treatment plan comprehensive – but he has a less than positive outcome. Why?

It turns out Hypothetical was unable to afford the range of medicines his doctor prescribed. Plus, his car was in the shop for another week, so he wouldn’t be able to attend physical therapy. He never set up an appointment with a specialist for the same reason, and his referral window closed.

Contextual errors, a term coined by Saul J. Weiner, MD, of the Institute for Health Research and Policy at the University of Illinois, are clinical failures to spot issues like financial or emotional difficulties that may prevent a patient from following a treatment plan  paying for medicine, for example, or physical deterioration, or life stress that just won’t allow room for solving yet another problem.

In one recent study Weiner led, addressing measured contextual factors improved health care outcomes in 71% of patients studied, compared with 46% of those with factors not addressed.

Doctors sometimes miss signals indicating that patients may have problems complying with a treatment plan.

Doctors sometimes miss signals indicating that patients may have problems complying with a treatment plan.

Weiner is exploring and identifying ways to improve how physicians individualize treatment decisions, including studies on how well clinicians retain information from patient interactions. The goal is to move healthcare to widely adopt what’s become known as “patient-centered decision making.”

As well as improving clincian-patient interactions, other interventions may include human help along each step of a care plan. Accolade has built a growing business of providing personal health assistants to the employees (and their families) of large self-insured companies. The assistants, about two-thirds of whom are nurses or social workers, work one-on-one with employees and their families to walk them through benefits and care decisions.

Alan Spiro, MD, Accolade’s Chief Medical Officer, says taking a broad view of a patient’s circumstances is key to helping him or her stay well or heal.

“When I was a doctor I quickly learned that a critical issue for my patients was not just the proper diagnosis; it was also all of the other factors in their lives when they had to deal with that illness. The psychosocial, financial and spiritual elements that are so critical to living become harder when you or a family member is sick,” he says.

The company has done much research on the process of healthcare decision making to identify why questionable decisions or wasteful care happens, he says. Financial constraints are among the reasons many patients reach out for assistance. These issues, coupled with barriers like transportation and work or family obligations, if not addressed, can contribute to overly hasty and emotion-laden decisions.

“Lower-income patients may call because they don’t understand their benefits and don’t know what something is going to cost them. We get calls literally from the parking lot of emergency rooms asking about benefits,” he says.

Accolade has seen a large reduction in hospital readmission rates, which they attribute to health assistants’ frequent check-ins with recently released patients.

“In the real world, people leave the hospital sick – you’re just not sick enough for hospital care. You’re frightened; you often feel alone. Maybe you don’t go to the pharmacy or for follow-up appointments,” Spiro says.

Doctors Spiro and Weiner will be our special guests for this week’s Great Challenges Google+ Hangout: Connecting the Dots in Patient-Centered Care. Join us Thursday December 5 at 2PM ET for this live online event. Tweet questions to #GreatChallenges and we’ll answer as many as we can on air. Sign up today or learn more.

Examined Lives: On World Diabetes Day, one patient’s story about the power of taking control of her own wellness

By Amy Lynn Smith

I’m about to celebrate 25 years of living well with type 2 diabetes. I say “celebrate” because I choose to celebrate how far treatment has come, and all the places it still can go to make this disease even easier to live with.

Most important, I choose to celebrate that type 2 diabetes is a chronic condition that’s largely up to me to manage. There’s nothing more empowering than knowing I can be in charge of my own health.

Living with diabetes isn’t a path you can walk alone

My initial diagnosis knocked me over. But I quickly realized that I could either take care of myself or suffer the consequences.

I did my best. I followed healthy eating plans and exercised. I took my medications as prescribed — medications that have improved significantly in the last 25 years. I saw my primary care physician and endocrinologist regularly, and they made adjustments to my medications that would help improve my blood glucose control for a while.

But it wasn’t enough. There were times I felt discouraged and lonely in my quest for wellness. And I became increasingly frustrated with my doctors’ frequent unwillingness to look at the big picture — to see me as more than a person with diabetes.

Diabetes is only one facet of my health

I’ve been lucky. I haven’t developed any serious complications after nearly 25 years. But despite good overall diabetes control, I still found myself struggling to feel my best. I was battling frequent bouts of insomnia and sometimes overwhelming stress, which aggravated my fickle gastrointestinal system. Other than occasional lifestyle recommendations, my doctors were all quick to reach for medication as a solution.

I asked for nutritional guidance and didn’t get much of it. I asked about my struggle to deal with stress, and they largely ignored the role stress can play in the management of diabetes and overall health.

Most of the time, they’d do some blood tests, give me some orders to exercise more and watch what I eat (without any specific direction), write a prescription, and send me on my way. This approach was anything but empowering.

Chronic disease is the intersection of so many of the Great Challenges of health and medicine: stress, sleep deprivation, the evolving role of the patient, whole-patient care and medical communication, at least for me. My care providers weren’t recognizing that. I knew it was time for something new.

Finding an approach to care that works for me

During my search for better ways to manage my diabetes, a friend who works in healthcare told me about functional medicine. According to the Institute for Functional Medicine (IFM), it’s an innovative approach to medical care that uses the latest medical research to develop personalized care for each patient based on his or her unique environment, lifestyle, and genetic background.

My friend had been diagnosed with rheumatoid arthritis. But after working with a functional medicine practitioner she discovered her only problem was allergies to gluten and dairy. Her symptoms quickly disappeared and she’s never felt better. “It changed my life,” she says.

It didn’t take me long to see that functional medicine was exactly what I’d been looking for. It’s grounded in the idea that chronic disease can’t be treated like acute disease — which is how my doctors, although well intentioned, had been treating me.

Here’s how Mark Hyman, M.D., chairman of the IFM, describes the difference between functional medicine and traditional approaches:

“Functional medicine is a new way of thinking about solving the puzzle of chronic disease. Current medicine is really the medicine of ‘what’: what disease do you have, what drug do I give. Functional medicine is the medicine of ‘why’: it’s focused on etiology, on causes and mechanisms. So if we can get to the root causes of disease — which, predominantly, for chronic diseases are lifestyle — and if we can address the fundamental drivers of chronic disease, which also drive our costs — then we can have a fundamentally different way of delivering healthcare, providing healthcare, and getting much better outcomes at much lower costs.”

Sure, my care providers had told me lifestyle changes are paramount to managing my diabetes, but I hadn’t found someone willing to give me the support to make the principles work for me. Until now.

I started working with a functional medicine practitioner about three months ago, and the personalized, holistic approach to care is unlike anything I’ve ever experienced. I don’t feel like I’m being “treated.” Instead, I feel like I’m an empowered partner in my own care — with the support of a practitioner who is standing at my side every step of the way. Between sessions, we exchange emails every few days to see how the changes I’m making are working.

She’s completely overhauling my diet, which I like to call it my “new fooditude.” I’ve cut out processed foods and do most of my own cooking, giving up the bad habit I’d developed of eating out far too often. Every once in a while is enough now. She’s also eliminated foods that can trigger unhealthy responses, and is adding them back in one by one to see if there are any I need to avoid for good.

Just over a month into my new fooditude, I’ve seen dramatic changes. My energy and stamina have improved, I’m sleeping better than I have in years, and when I’m faced with a stressful situation I find myself responding with a calm, clear head.

Best of all, my body is starting to do a better job of producing insulin naturally as it adjusts to my new fooditude. My practitioner has told me I’ll probably never be able to stop taking insulin, but I’ll probably need less of it over time. And I’ve already thrown two medications overboard that were doing nothing for me but masking symptoms I’ve relieved by eating better.

This journey is just beginning, and it will probably last a lifetime. But I can say this: I like where it’s headed. I finally feel like I have a care provider who is seeing the whole me — everything that makes me who I am and contributes to my sickness or health. When you consider that diabetes is something you live with every day, like any chronic disease, a holistic view is essential.

I’m more than my diabetes. I’m a multifaceted person. I’m grateful to have found a practitioner who sees me that way, and an approach to medicine that provides ongoing guidance while putting me in charge of my own wellness.

-1Amy Lynn Smith is a writer and strategist who frequently writes about healthcare. You can find her at alswrite.com or on Twitter @alswriteShe will moderate a TEDMED Google+ Hangout tomorrow, “Finding new allies in chronic disease care.” Tune in at 2pm ET for a conversation with experts and to ask your own questions.

 

Posts by guest contributors do not reflect the views of TEDMED.

NYC doctors can now prescribe fruits and vegetables

An apple a day might keep the doctor away, but she won’t mind – she might even write a prescription for it.

As reported by the New York Daily News, Two New York City hospitals, Lincoln Medical Center in the Bronx and Harlem Hospital in Upper Manhattan, are launching what’s called The Fruit and Vegetable Prescription Program (FVRx). It aims to help overweight children and their families access fresh fruits and vegetables to counter obesity and related diseases.

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FVRx works like this:  Doctors and nutritionists assess a patient’s eating habits and prescribe produce as needed. Kids and their parents are given “Health Bucks” to use to purchase produce.

“A food environment full of processed foods full of fat, sugar and salt is contributing to obesity, diabetes, heart disease, stroke, cancer, and other chronic diseases,” said New York City Health Commissioner Dr. Thomas Farley, in a press release. “The Fruit and Vegetable Prescription program is a creative approach that, with the inclusion of Health Bucks, will enable at-risk patients to visit any of our 142 Farmers Markets and purchase the fruits and vegetables that will help them stay healthy.”

The program is coordinated by Wholesome Wave, a non-profit based in Bridgeport, CT, that aims to seeks to provide locally-sourced whole foods to underserved communities. The organization has programs in 28 states and the District of Columbia with more than 60 partners implementing subsidy and incentive programs for businesses and consumers.  A similar program started in 2010 in Massachusetts has reportedly met with success.  The U.S. Food and Drug Administration also has had a Farmer’s Market Nutrition Program for women, infants and children since 1992.

As Rebecca Onie of Health Leads pointed out in her TEDMED 2012 talk, it’s difficult for families facing hardships to have the basic resources necessary to heal from illness or even to maintain wellness. Health Leads works to connect patients in need with appropriate social services. Its work stems from a growing awareness of the major role social determinants play in health.

On Thursday, September 19th, TEDMED will host a Google Hangout related to the issue of consumer behavior and food purchases. Stay tuned for more information on when to tune in, and visit TEDMED.com to learn more about the Great Challenge of coming to terms with our national obesity crisis.

Examined Lives: My Sarcoma, the story of a tumor told with art

By Jacob Scott

This is the story of a Cancer Connection I never hoped to make and also the one that has brought me the most joy.

About a month before my family and I left for the University of Oxford, my dear friend and neighbor Ray came over and asked if I’d look at this side, where an orange-sized mass was growing.

So, you know I’m a cancer doctor, so you can probably guess how this story plays out.  But before I tell you (or let Ray tell you), I want to share a bit about Ray. He’s an artist whose paintings have always struck me, and my scientist and physician friends, in similar ways.  There is just something alive about them.  Something cellular.  Something moving.

This makes sense as Ray studied biology as an undergrad, but it is also says something about the artist: that there is always something moving in his mind. At the heart of this artist is a scientist.

I’ll let him share his manifesto about his treatment, and the subsequent healing that he has found through this new project, “My Sarcoma.”

My name is Ray Paul. I am a 50-year-old artist, musician, frustrated biologist and myxofibrosarcoma patient. As of my latest scans in February 2013, I am free of detectable cancer. My next round of scans are scheduled for June 2013.

My journey begins in the spring of 2011, when I noticed a rapidly enlarging lump protruding from my left flank. Unfortunately, I fell into the category of the uninsured who wait and hope for their medical issues to resolve magically. Finally, as the mass grew to the size of an Idaho baking potato, I felt compelled to go into the local Emergency Walk-In Clinic. I was told it was likely a lipoma and I needed to find someone to remove it. After weeks of worry and several inquiries, I approached a surgeon friend who agreed, with some trepidation, to perform a tabletop resection, using local anesthesia. It soon became clear that the mass was more than a lipoma.

I was sewn up and a sample was sent to his pathologist who forwarded it to the pathology team at Moffitt Cancer Center. Soon thereafter, I received “The Call.” Shock and confusion rushed in, but curiously, were followed by a sense of calm resolve and numb determination.

I was admitted as a patient to Moffitt Cancer Center in August of 2011. I began neoadjuvant radiation therapy in September 2011, followed by a radical resection in 2012 of the 12 x 12 cm myxofibrosarcoma. In July 2012 I was diagnosed with a lung mass, and underwent a lung subsegmentectomy to remove a metastatic myxofibrosarcoma.  In November 2012 I began adjuvant radiation therapy.

During this life-consuming ordeal I have placed my complete faith and trust in my team at Moffitt, and in my physical and spiritual ability to heal. Never have I dreaded going into Moffitt. The strength and determination of my fellow patients has been humbling and has greatly increased my sense of compassion. I have been inspired to create a painting for the Radiation Department, which hangs in the waiting room.

Porpoise Song

Porpoise Song

and have donated a piece to the Integrated Mathematical Oncology Department.

Sweet Jane

Sweet Jane

I am currently embarking on a collaborative endeavor entitled “My Sarcoma” project.  I plan on combining painting, photographic images of my tumor cells, printmaking, video and music to create an exhibit that illuminates my experiences as an artist and cancer patient. I envision my art to be a prescient, visual manifestation of the battle raging within, and a powerful testament to the beauty of Hope.

As a teaser, here is a prototypical Sarcoma piece from Ray.  You can see his signature style of abstract forms detailed into cellular figures, and beneath, an H&E pathology image of his own tumor.

Ray's Sarcoma

Ray’s Sarcoma

Jacob Scott is a TEDMED 2012 speaker who blogs at cancerconnector.blogspot.com.  You can follow him @CancerConnector. You can follow Ray on Twitter at @raypaul4.