Author: Stacy

Invisible caregivers: Millions of kids help take care of family members without help

~ Stacy ~ Leave a comment
More than a million children and adolescents are caring for family members.

What Kyllian Warman remembers most about her childhood is caring for her father, an alcoholic who eventually developed liver and colon cancer. She helped her mother feed him, dress him, give him medicine and clean up after him, all while also watching her younger brother.

“If I wasn’t taking care of my dad, I would support my mom, helping her do taxes, go through bills and do housework. I just thought, ‘This is what I have to do. Everybody’s got to make it out of this alive,'” says Warman, who is now 20.

Warman was just one of thousands of American children who perform such caregiving duties every day. According to the latest data available from the National Alliance for Caregiving (NAC) and the United Hospital Fund, in 2005 at least 1.3 million U.S. children ages 8 to 18 helped to care for a sick or disabled relative, with 72 percent of these caring for a parent or grandparent and 11 percent for a sibling. Read more

 

Great expectations: New research is leading to an understanding of how placebos work

~ Stacy ~ Leave a comment

Screen Shot 2015-10-15 at 8.13.37 PM

For decades, placebo response was generally seen as “an uninteresting source of noise that interfered with pharmacological research,” says Bret Rutherford, MD, assistant professor of clinical psychiatry at Columbia University. But these days, scientists are studying placebos as a psychobiological phenomenon and the placebo response as a potentially important part of the success of many medical treatments. Read more

Turning lives around with hope

~ Stacy ~ Leave a comment

Some 16 million American children — 22 percent — live in poverty, a factor that increases their chances of academic struggles, social and behavioral problems, and depression.

Yet not all poor children are doomed to bad outcomes. Some survive and flourish despite hardships. Why? As a researcher who worked at the Yale Child Study Center from 1992 to 2005, Valerie Maholmes, PhD, suggests that poor children who succeed have a factor in common: hope.

“I’m not talking about miracles,” explains Maholmes, chief of the Pediatric Trauma and Critical Illness Branch at the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD). “I’m talking about planning and motivation and determination.” Read more at Monitor on Psychology

Why aren’t more people taking Truvada?

~ Stacy ~ Leave a comment

In 2012, the U.S. Food and Drug Administration (FDA) approved the use of the first-ever drug to protect against HIV in high-risk uninfected individuals. Studies showed that Truvada, when taken consistently, greatly reduced the risk of infection in men having sex with men and transgender women having sex with men, prompting one FDA panelist to say Truvada was “an amazing opportunity to turn the tide on this epidemic.”

Two years later, the number of Americans taking the pill is minute compared to the half-million who the Centers for Disease Control and Prevention (CDC) thinks could benefit from Truvada, otherwise known as pre-exposure prophylaxis or PrEP. Why has adoption been so slow? Read more at Monitor on Psychology

How chronic stress harms our DNA

~ Stacy ~ Leave a comment

Recent research suggests chronic stress damage starts before we’re even conceived and cuts into our very cells. A number of studies have linked stress with shorter telomeres, a chromosome component that’s been associated with cellular aging and risk for heart disease, diabetes and cancer.

How do personality and environment play into this phenomenon? Read more (Monitor on Psychology, Oct. 2014)

An interview with Thomas Goetz on his new venture, Iodine, and why good health data design is critical to patient decision-making

~ Stacy ~ Leave a comment

Thomas Goetz is co-founder of IODINE, a new company that uses data information design to inform patient decisions.  He’s been a TEDMED speaker, executive editor of Wired, and wrote “The Decision Tree,” about using technology to help make health decisions. (Reprinted from TEDMED.com)

You’re now Entrepreneur-in-Residence for the Robert Wood Johnson Foundation, working on two projects to improve the patient experience. Can you first talk about Visualizing Health?

We’ve created a library of validated health visualizations. When people talk about communicating health information to individuals, there’s a dearth of validated examples of what the information should look like.  For example, if you’re trying to communicate heart risk information – if you quit smoking, your risk will of cancer will go down from 50% to 30%  — what does that look like in actual practice?

Thomas Goetz

There are the Edward Tufte’s of the world who have an expert [design] sense.  But we wanted to actually validate, though statistical surveys and other testing instruments, what works best for different groups.  We tested pie, bar and spread charts and different visualizations on various audiences and now have a library. We’ll be putting it online, hopefully by early February, for people to use as a reference point under a creative commons license.  Our hope is that these will become templates that people can inspire and adopt in their own patient communications efforts, whether they are commercial or non-profit.

 

It seems that over the course of human history we’ve been all too willing to give over responsibility for our health, letting the apothecary leach blood or trusting that the medicine man’s dance will cure us. What accounts for this new era of patient engagement?

In many ways it’s a continuum from the 1950s or ‘60s.  We’re now in a place where we can implement things more deliberately. One of my favorite surveys to reference is a 1961 survey that asked oncologists how many of them would tell their patients that they had cancer. And 90 percent of said they would not disclose the diagnosis; that their patients were probably not ready to know. Of course, that seems completely unethical now. The gradual change in terms of doctors learning to include their patients in diagnosis and care is forced not just by a sense of ethical duty, but also by system structures such as the burden of cost of chronic disease care.  A patient with chronic [illness] may be obligated to do a lot of care on his or her behalf when they can’t have help 24/7.  All of these things are coming to a head, and we’re realizing it’s not just a matter of good practice but one of simply executing what we need to do.  The patient has to be part of the system.

Another of your projects with RWJF is Flip the Clinic, which talks about how to rethink a typically brief doctor’s visit to make it more productive and meaningful.

We’ve been trying to come up with some tools to put in the ecosystem that people can adopt or give feedback on, including ones we’ve gestated internally but also deconstructing things out there that have worked.  We haven’t invented the idea of improving the doctor-patient encounter, but we’ve been amazed to see Flip the Clinic resonate already as a sort of GitHub – the open software collaborating site — around the practice of clinical medicine.  The idea is to help people not reinvent the wheel and [adapt what’s available] to their own needs. When it debuts, fliptheclinic.org will have two main areas: A hub for content – actual tools and strategies people can bring into their own institutions – and secondly will have a community component where people can exchange what they’ve learned, offer new ideas, connecting, say, people from Seattle to New Jersey and helping them understand what has worked in one place that may help solve a similar quandary in a different city.

What qualifies as real change?

It’s a balancing act – we want to have real innovation but we need to  offer tools that don’t just appeal to the converted; they need to work far and wide. Late last month, I had a morning where first I talked to a nurse practitioner at a pediatric clinic in Camden, New Jersey, which is in an underserved community.  They’ve having their clinic budget hatcheted every quarter.  Physicians are frustrated.  This is a facility in true need of new approaches and something that re-orients them toward a positive engagement with their population. I went from that call to one with the Mayo Clinic; they were interested in how they might be able to participate. These are institutions on the opposite end of the spectrum, and one of our core objectives is for Flip the Clinic to work in both places.

In initial discussions, it turned out that both providers and patients wanted more control over clinic visits.  What else do they want?

We also earned there was a mutual yearning for some joy and positive emotional experience out of that encounter from both sides, and especially from the physician.  So one of the things we’ve been trying to be careful about is trying to stuff more into this already limited resource of a 15-minute doctor visit.  For everything we add to that visit, we need to take something off their plate. The challenge is to make these things pragmatic and executable in reality and not just say, “Do more.”

Regarding your new venture, Iodine, which uses data design to help inform patient decisions: Is good design late to the game with healthcare?  Or it is on the same trajectory as other industries?

I think design is an underexploited tool in healthcare, though it’s ahead of the curve in some ways. Health care and medicine are already based upon a data paradigm; there’s a lot of information flowing through the system. But best practices in design thinking are not well applied, and they’re not oriented towards the patient.  Our goal is to leverage data, to translate it and visualize it, so that ordinary people can act on it and make better decisions about their medications. That’s not an easy problem. It’s a hard thing to get people out of their routine, especially in a demanding world like healthcare. But that doesn’t mean it’s impossible – and design is essential to that. That’s where the inherent data orientation of healthcare offers some low hanging fruit.  Iodine’s core tenets are data-slash-analytics, behavioral science, and design.  They’re the three legs of the stool for visualizing and presenting information in ways that increase the likelihood that any individual will act to do something better for their health. [Ed. note:  Iodine will formally launch in February.]

While you were at Wired you ran a great piece showing how design could help patients understand their test results. How come doctors haven’t already demanded better design for their own information? It must be hard looking at that gobbledygook all day. 

Unfortunately, this brings us to the horrible world of EHRs. The prevailing industry products are really crappy in this regard; they come from an enterprise software perspective that’s 10 or 20 years old. A physician is almost always not making decisions on technology procurement. Unfortunately, sometime it doesn’t matter what your frontline needs are compared to the cost determinations of your IT department. The cool thing is that there is another set of savvy tools going straight to the physician that are lightweight and easy to adopt.  There are some companies like Practice Fusion and Pingmd doing innovative things with communications or messaging component. And other companies are working on visualizing lab data, like WellnessFX. That’s a much more interesting strategy and more fun to watch. Sometimes developers use the iPad strategy — taking what physicians are already using and making that your platform, rather than the institutional computer system.

One can’t imagine the current generation of medical students going into the clinic and being satisfied with old-school data design.

That’s precisely where one of these pressures is going to come. The current generation of physicians is being dragged along into the EHR world.  The next generation is going to lead the way, I think. They’re going to demand better tools, both for themselves and for their patients. That’s the world I want to live in; that’s the world I want to in some way help create.

The evolution of trans health

~ Stacy ~ Leave a comment

Dana Beyer, MD, is a retired eye surgeon who has practiced medicine in Kenya and Nepal, served as candidate for Maryland State Delegate; and fought for the first countywide ban of artificial trans fats in the U.S. She also lived most of her life as a man.

Are there many transgender MDs?

I’m not the only trans physician; I had the honor of performing in the first all-trans performance of The Vagina Monologues and was onstage with two other trans female physicians. I know physicians who have transitioned in place and at work. It’s quite doable in many parts of this country. If you bring something of value to your community, they’re often willing to overlook or ignore identity changes that you’re laying on them. Most people are willing to overlook lots of quirks. When I went to my rabbi to tell him I was going to transition, he said: ‘I only have one question. Are you still going to read the Torah for us?’ That’s America. We’ve got all sorts of diversity so this particular type is not unique in being different.

Is the system coming around? What’s the current biggest barrier?

The work I’m doing with Kaiser [Permanente] is to help them roll out their program of culturally competent, medically comprehensive trans coverage. They’ve got about five million covered out west and they want the mid-Atlantic region to be completely trans-supportive as well. It’s accelerating. The Affordable Care Act is completely inclusive; the law states that anybody who receives any Federal funds has to be inclusive. You cannot discriminate against trans people. That’s the theory. Implementing that, of course, is a whole different thing.

I’m fortunate that I was a practicing surgeon and made enough money that I could survive post-transition. A lot of trans people have never had access to health care because they couldn’t afford it. When the Affordable Care Act gets going, there will be more provisions made available. We’re trying to make Medicare and the Veterans Administration completely inclusive with respect to surgery. There are a growing number of companies now competing with one another to offer it, particularly in the IT sector, because they are realizing that if you want to attract good employees you have to be open to gay and trans people, and the best way to do that is to offer good healthcare. What ten years ago cost me $100,000, I expect in five years will cost no more than a couple of thousand dollars in deductibles and co-pays. Which is a wonderful thing, because this is a, at root, just a medical condition that needs treatment.

Can you speak to the barriers transgender individuals might face as they navigate health care?

The trans community has been so marginalized and oppressed for so long that many have a victim mentality. They’re afraid to even go into a doctor’s office. I was closeted for 50 years, so I speak from experience. If you’ve transitioned to become a male, for example, and you’ve been seeing a gynecologist and now you’re the only guy in the waiting room, this makes you uncomfortable. Trans men have a much easier time socially, in general, than trans women. There is so much misogyny out there; the problems of bigotry I face are far more pervasive fundamentally from a sexist perspective before one even gets to a specifically trans-misogynistic one. But having overcome my personal challenges, nobody intimidates me; nobody gets away with bullying me.

Screen Shot 2013-12-24 at 2.14.09 PM

It’s a hell of a lot harder being a trans woman and even harder being a poor black trans woman. Those are the people who are most likely to be murdered, and are far more often unemployed and homeless and spiritually crushed. All of these different forms of prejudice coalesce.

Often times trans people will not tell their doctors if they pass well, because they want to have a normal relationship with their doctor. But you can’t do that if you’re lying about your basic identity, because it matters whether you’re genetically male or female, when you transitioned, and how long you’ve been on hormones. You can’t hide that stuff from your doctor. Going back into a closet vis-à-vis medical care is crippling, and it’s not helping your physician treat you as a full person.

There are nuances that medicine needs to grapple with to make trans patients feel more comfortable, but that kind of cultural competency doesn’t come easily. The upcoming medical generation will do better than my class has done, and certainly better than teachers who told me – not directly but to the class as a whole -in psych class that I was a pervert and a deviant. I’ve turned the tables; I’ve gone back and taught in the same auditorium where I was told those things 37 years earlier, and I say: The circle is complete. We now know that my life experience is more truthful and real than what we were taught then.

Where are we with the science of studying transgender health?

It’s getting better. There’s very little argument that gender identity exists. When it comes to trans people, there’s enough evidence out there that we’re neurologically who we say we are. Basic neuroscience has validated the existence of trans people, and the concept of brain sex and its difference from genital sex; the work that’s going on with other forms of intersex conditions that has gotten short thrift in med schools — it’s beginning to happen here.

We only recently, last December, removed being trans as a mental illness form the psychiatric bible, the DSM. The trans community finally had its day of de-pathologization, the way the gay community had in 1973, but we’ve only just gotten there.

It’s far better in Europe; there are consortia looking at this whole condition. The Europeans are not prudes like us, so somebody can apply for a grant that can say sex or gender or transgender in the title and it gets accepted like everything else. That would often kill it in this country.

What, in your opinion, tips the level from caring about something to speaking out and mobilizing to make it happen?

When I was recovering from major surgery when I was 13, which was a result of my DES exposure in utero — which made me intersex and a transwoman — I went into renal failure and cardiac arrest. While recovering, I told my mother I was going to be a doctor so nobody would have to go through what I had. She thought I meant the kidney failure, that maybe I would become a nephrologist. What I meant was that nobody would have to go through this intersex condition that I couldn’t share with my parents, because they threatened to have me institutionalized when I came out.

But as long as I was closeted I couldn’t act on it. I was removed from what was important to me; I was removed from myself. I’ve done more than 10,000 surgeries and they had little emotional impact on me because I was shut down. There’s no emotional attachment. I know I did it; I earned a good living; I remember things people wrote and cakes people made for me, but there’s no attachment. It’s only after I transitioned that everything has been more real and alive and colorful. We do know that the memories that most vivid and are easiest to retrieve are those with the most emotional content to them, but you need to be receptive.

It was only when I finally became myself that I realized I needed to — yes, it’s a cliché — pay it forward. I am a physician; I am a scientist. I bring a unique perspective as such to the issues of human sexuality. I knew that I had gotten to where I was because of the work others had done before me, pioneers who were willing to take those risks.

My primary motivation is to help the next generation, to make sure that kids get treated well and don’t have to live in a closet for 50 years. It’s turned out that trans people suffer from post-traumatic stress syndrome from a very young age before they’re treated. Just knowing you’re in a wrong body, and not being accepted for it or being helped to deal with it — that causes PTSD. We can see those brain changes on scans. Those changes already exist in kids. You can imagine what those changes are like with somebody who is to 30 to 40 years old. I like to think of my cohort as dinosaurs. There will no longer need to be people like me who are closeted and married to the wrong person.

Now every day I get up, and I’m just myself. Mine may not be the only voice, or the best voice, but it’s a unique voice. And you have to be yourself, because that’s where you’re most authentic. When necessary you move on. It’s a big world. There’s a lot of stuff to do.

Reprinted from TEDMED.com.

 

Artist Raghava KK on learning to be creative

~ Stacy ~ Leave a comment

Raghava KK is an artist, TEDMED/TED speaker and National Geographic Emerging Explorer.

Q. In your talk at TEDMED 2013, you showed us your latest work, in which brain wave technology helps viewers shape your art according to their thoughts and moods. How have people responded so far? 

Contrary to what I anticipated, my talk at TEDMED received an overwhelmingly positive response. I thought the TEDMED audience would predominantly think in fundamentals, and there would be a disconnect. But any science taken to a certain level becomes art. It goes into the ability to transcend to abstract the essence of its thing, and apply it beyond a single application. There’s only a limit to which you can be trained in any one thing.

From doctors to scientists, there are now a lot of people who are in conversation with me about how we can add value to each other’s methods of inquiry. I’m really excited that I’ve gotten to write the forward to a textbook on cultural sensitivity using perspectives in psychiatry that is being brought out by Massachusetts General, Harvard’s teaching hospital.

Did you learn anything surprising about the brain during this project?

Yes! It shocked me the number of emotions we can go through in one minute.

We like to think about ourselves in absolutes, but we are dynamic and continually changing. Also, I’m surprised by the degree to which you can control brain activity. I can manipulate my art pieces on cue. When some people have that feedback, it can make them feel uncomfortable; with others, it helps neutralize their feelings of fear.

You’re working with an education innovation initiative, NuVu, that stresses creative problem solving skills, and have said, in an interview with Dowser, that education now should be about welcoming instability. Your art encourages dynamic perspectives as well. What is it about the world we live in that makes this so important? Can you point to something in your life or learning that led you to embrace the impermanent?

The one thing we know about the world for sure is that it’s constantly changing.  Evolution is not a ladder that’s built on linear progress. It’s more like a round treadmill, where we’re constantly adapting in relation to a dynamic environment.

So it seems appropriate that we learn in a manner that correlates to the state of the human condition and environment. I’ve reinvented myself many times. I’ve always felt that my education was great; it taught me who I am.

But it’s been my creativity that has constantly told me I can be much more. I could have never planned my whole art career and trajectory. I allowed it to unfold by taking an active role in my life and my future. I think that the incident that really sparked this idea was my decision to quit formal education, and to embrace and learn from impermanence. I haven’t had a formal education since high school, so the world has been my classroom.

A screen for POP-IT, an iPad app designed by Raghava KK. Viewers change the characters by shaking the tablet.

A screen for POP-IT, an iPad app designed by Raghava KK. Viewers change the characters by shaking the tablet.

In that same interview, you said, “Even in my own life, I keep putting myself in uncomfortable situations because of the amount I learn.” Can you give a few examples?

Here are three. First, I recently moved back to India, although I was well settled in New York. I wanted to have my third child here, and expose my children to this impossible democracy, which is an experiment in bringing together multiple, dissimilar perspectives and thus gives us so much to experience and to learn from.

Second, I’m starting a company from scratch and learning about entrepreneurship, because I really want to make an impact with this idea, to transcribe it among audiences. It’s a web-based and mobile educational platform called Flipsicle, and it allows you to actually see multiple visual perspectives on any topic. It’s a man-powered Google for images that uses collaboration and crowdsourcing.

We are producing and consuming more pictures than ever before, but desensitizing us to the fact that pictures are only a single view on an event and truth. Even in our schools, we start out with absolutes and go to abstract at a later stage, like high school, which is far too late. We need to disrupt this teaching and go to abstract thinking at a much earlier stage to really teach perspective.

Third: Once my wife and I accidentally found ourselves in a nudist resort.

This is what happens when an Indian books a holiday without knowing the difference because naturist and nature, because in California “naturist” means “nudist.”  We checked in late in the evening; everyone was wearing clothing, because it was cold.  In the morning I opened the window and saw a guy doing yoga in the buff. Then, my wife and I walked out and we were the only people clothed. So – do we stay here, or we go back home and pretend this never happened? But we thought,  ‘What the hell do we have to lose?’ And it led to an entire series of paintings I did on eros and nudity.  I discovered that it’s the continuum that’s erotic, not the absolute states of nudity. The feeling of the weight of clothing is something you just forget; it’s a change of the clothed state you notice.

"Untitled" by Raghava KK, acrylic on canvas, 2011.

“Untitled” by Raghava KK, acrylic on canvas, 2011.

You mention often that you hope your work will inspire empathy. Can you name a piece of art, or an artist, who inspired that in you, or who/that greatly changed your own perspective?

An artist need not look to art to be inspired, but to life. I see a need for empathy in the world, and that’s what inspired me.

Empathy is fashionable word right now, and it can be easy to misrepresent.

To me, empathy is a tool and it has survival value based on context.  For example, sometimes apathy is important. Extrovertism is overrated. Leadership is overrated; not everyone is a leader. We need to understand these things as continuums that have value based on context. So empathy means contextualizing where I come from, where you come from.

For example, I don’t measure myself by the same metrics by which others do, whether it’s the art world or the commercial world or the entrepreneurial world or the TED world. For someone to understand what I – or anyone — does, they have to have an understanding of how I measure my actions. The need for human dignity comes from these factors. It’s a constant need. And I need to be more than an artist. Life is just a tool. Art is just a tool.

Reprinted from TEDMED.com