Turning lives around with hope

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?

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

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

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.

Why Stress is Public Health Enemy Number One

The following is an interview with Elissa Epel, a UCSF psychologist who has studied the health impacts of stress, from its effects on our DNA to its relationship to overeating, for two decades. Published on The Huffington Post, 4/3/2013

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.

I was surprised to see your study showing educational attainment is also related to telomere length. Why might 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.

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.

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.

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.

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.

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.