Exploring the arc of innovation – Q&A with Thomas Goetz

At TEDMED 2014, Thomas Goetz, health journalist, science writer, and entrepreneur, shared a riveting story about one of the lesser-known heroes of medical research whose successes carried crucial implications for future health discoveries. Curious to learn more, we reached out to him with questions.

"Science is not about that first moment - it's about the rules and the process that we use to explore ideas." - Thomas Goetz, TEDMED 2014 [Photo: Jerod Harris]

“Science is not about that first moment – it’s about the rules and the process that we use to explore ideas.” – Thomas Goetz, TEDMED 2014 [Photo: Jerod Harris]

 

What motivated you to speak at TEDMED?

I spoke at TEDMED in 2010, and giving that talk had a profound impact on my work and my career. I knew that, given the chance, this was an invitation I couldn’t turn down!

Why does this talk matter now? What impact do you hope the talk will have?

“Innovation” is such a buzzword these days. Everyone wants to be an innovator, every organization feels compelled to be innovative. The word smacks of shiny technologies and slick strategies; it seems almost a facile topic. But innovation – true innovation – is hardly easy. It’s a struggle of ego and conflict and rife with failure. Most of all, it’s hard work.

To me, the story of Robert Koch’s scientific efforts shows that Koch was innovating on two levels at once. The first was science, with the investigations into the germ theory. But, just as difficult was the fact that he had to invent a process. He had to devise a rule set that allowed the pursuit of discovery, what we know now as “in vitro science.” This process, which we take for granted today, is received knowledge. It’s important to recognize that the process is as much a thing as the result of the process. What’s more, we’re in the midst of a new area of innovation today – the idea of “in vitae science,” which I discuss in my talk. My hope is that people will see that creating the rules that govern this new kind of science are as much for the making as the laboratory science of the 19th century. And, it could be just as impactful.

What’s next for you?

At my startup Iodine, we are actively trying to build the rules and technologies that might allow in vitae science to flourish. By giving people a forum to share their medical histories and creating a new dataset that can help drive better decisions for others, we are providing a quantitative assessment of subjective experience. It’s very much continuing what I spoke about at TEDMED, and putting these ideas into real life.

Genome sequencing – is it for everyone? Q&A with Amy McGuire

At TEDMED 2014, Amy McGuire, Leon Jaworski Professor of Biomedical Ethics and Director of the Center for Medical Ethics and Health Policy at Baylor College of Medicine, made us think twice about the unintended consequences of getting our genomes sequenced. We reached out to her learn more.

"You all know this, but it is worth stating the obvious: genomic sequencing is not an infallible prophecy of our future." - Amy McGuire [Photo by Jerod Harris, TEDMED 2014]

“You all know this, but it is worth stating the obvious: genomic sequencing is not an infallible prophecy of our future.” – Amy McGuire [Photo by Jerod Harris, TEDMED 2014]

 

What motivated you to speak at TEDMED?

I have seen many TED and TEDMED talks over the years, and have always found them to be incredibly thought-provoking and inspiring. To be honest, at first I was a bit intimidated to give a TEDMED talk. I questioned whether my story was worth telling to such a large audience, and I worried about stepping outside my comfort zone of a typical academic lecture to explore the more personal and humanistic side of my work. However, I feel very passionately about how our ability to learn increasingly more about our biological make-up through new genomic technologies influences how we think about the more existential question of who we really are. Giving a TEDMED talk allowed me to explore this question for myself and, I hope, to initiate a more public dialogue on this topic.

Why does this talk matter now? What impact do you hope the talk will have?

A complete draft of the human genome was published less than 15 years ago. It took 13 years and $3 billion to complete the Human Genome Project. Today, individuals can have their genome sequenced for just a few thousand dollars. For many, genome sequencing can provide important information to help diagnose and treat disease. Others are interested in having their genome sequenced because they want to know their future risk of disease. As genome sequencing becomes more widely available, individuals will need to make informed decisions about whether or not they want this information. I hope that this talk will help others understand the benefits and limitation of genomic sequencing and help make more reflective and informed decisions about obtaining their own genomic information.

What kind of meaningful or surprising connections did you make at TEDMED?

The most meaningful connection I made at TEDMED was with a delegate whose children are suffering from a rare undiagnosed genetic condition. They are very sick and she had been talking to researchers and physicians all over the United States about trying to get their genomes sequenced. After hearing my talk, she sought my help and I was able to connect her with my colleagues at Baylor College of Medicine who agreed to sequence her children’s genomes. While talking with her, it became clear just how difficult the diagnostic odyssey with her children has been. I am not sure if the genome sequencing will provide her with the answers she is looking for, but it meant a lot to me to hear her story and to be able to help her make the connections she was looking for.

3 Deadly Myths That Masqueraded as Knowledge in Women’s Health

by Betsy NabelPresident of Brigham and Women’s Hospital and Harvard Medical School professor.

Knowledge in science is something we never fully grasp because it is continually reshaped by new information. Information – such as the fact that women and men are different, from cells to selves – doesn’t change. Information is bounded in certainty. But we are at a particular disadvantage when the information that serves as the foundation of our limited knowledge is itself shaky. In the case of women’s health, myth and misinformation have been rampant and deadly.

Women's health leader Betsy Nabel at TEDMED 2014. [Photo: Sandy Huffaker for TEDMED].

“Humility is the secret ingredient that unveils truth.” Women’s health leader Betsy Nabel at TEDMED 2014. [Photo: Sandy Huffaker for TEDMED].

No myth has been more pernicious, or has cost as many lives, as the one that might easily have killed a patient of my own. It was 1983, and I was a young, hotshot cardiology resident, who of course, “knew everything.”  One night, a 32-year-old woman arrived in the emergency room where I worked. She described vague symptoms: aches, fatigue, a low-grade fever – nothing terribly specific. I ran some tests, didn’t find anything telling, and sent her home with Tylenol.  Two days later she came back with a full-blown heart attack.

The problem was, I knew that was impossible. I had been trained by the best, and the best had taught me what the best had taught them: Heart disease was a man’s disease, and the primary symptom of heart attacks was chest pain, which my patient did not have.

Thank goodness, that woman survived.  Her case has driven my career-long commitment to understand the difference between men and women’s health, and to raise awareness of women’s heart health in particular. Today we know not merely that women die of heart attacks, but, crucially, that women experience an entirely different profile of symptoms than men do.

In that case, we simply didn’t know what we were certain we did know. The same was true of a second myth that scarred women’s health for quite some time: that hormone replacement therapy improved women’s health. The model was simple: as women enter menopause, estrogen levels drop, and health problems ensue. The solution seemed intuitive and logical: replace the estrogen.

For years, the medical community relied on dogma — received knowledge — that these treatments worked.  Two in five menopausal or post-menopausal women received hormone replacement, in part to prevent heart disease.

But then scientists challenged the known, by putting this “knowledge” to the test. A multiyear, multimillion-dollar study by the National Institutes of Health – the Women’s Health Initiative (which is the brainchild of then-NIH Director Dr. Bernadette Healy) – examined more than 160,000 women and made a startling discovery. Not only did hormone replacement therapy not prevent heart disease; it actually caused it.

That visionary study — undertaken, significantly, by the public sector at sustained public expense — has saved countless women’s lives.

Today, a third myth is killing women, and this one remains enshrouded in misinformation. Just like we used to think heart disease was a man’s disease, today we think of breast cancer as the most important women’s cancer. Of course, in many ways it is. But lung cancer kills more women than any other cancer — nearly 200 every day, most within a year of diagnosis.

Yet, perhaps because of the stigma associated with lung cancer stemming from an inaccurate perception that the only way to get lung cancer is to smoke – which is especially wrong when it comes to women — research in this disease is chronically under-funded, especially measured by the harm it causes to individuals and families.

Women who have never smoked appear to be at greater risk of developing lung cancer than men who have never smoked. Of the 20,000-25,000 nonsmokers diagnosed with the disease each year, more than 60 percent are women.  Women also develop lung cancer at an earlier age than men. Yet, unlike breast and prostate cancer, for example, there is no widely accepted screening test for lung cancer.

Lung cancer thus presents a double myth: first, that it is solely a smoker’s disease; and second, that it is a cancer women don’t need to worry about.

These myths are a compelling reminder of the need for researchers and clinicians alike to treat men and women as what common sense tells us they are: different. That means clinical trials need to impose a gender lens at every stage of discovery and explore the unique effects of diseases and therapies on women as well as on men, which will lead to better health for both sexes.

An oft-shunned word, ignorance, carries great importance when we consider it as the driver of scientific inquiry, and thus, the molder of new knowledge. Yet when myths are widely believed to be facts, ignorance can kill. We owe half the world’s population much more than that.

Elizabeth Nabel, the President of Brigham and Women’s Hospital and a professor at Harvard Medical School, shared a personally revealing story on the TEDMED stage that pointed to how the limits of knowledge can be a weakness and how accepting our ignorance can be a strength. We are honored she has written an original piece for the TEDMED blog.

An Emerging Era of Vitalized Electricity: Q&A with Mark Levatich

At TEDMED 2014, Mark Levatich urged us to imagine the possibilities of a world vivified by electricity. Inspired by his enthusiasm, we reached out to him with questions about his talk, and any tips he has for young innovators.

"Electricity should be boring by now, but waves of revolution ripple up from initially small innovation to consume and transform our world.  Why, when we see the timeline, and the consistency of change, could we ever think the wonder is done?" - Mark Levatich at TEDMED 2014 [Photo: Kevork Djansezian]

“Electricity should be boring by now, but waves of revolution ripple up from initially small innovation to consume and transform our world. Why, when we see the timeline, and the consistency of change, could we ever think the wonder is done?” – Mark Levatich at TEDMED 2014 [Photo: Kevork Djansezian]

 

Why does your talk matter now? What do you hope people learn?

I knew my great-grandfather; he fought in WWI on horseback, and later lived in a household full of Apple products. We can imagine the transition of living in his world and expect the same scale of change in ours. The advances may not look rapid but we’re still rehashing the same tools of computers and programs. Leaps that challenge our imagination arise from fundamentally different abilities. That is why shape-changing plastic is primed to alter the course of human history. It can solve hundreds of existing problems, in unexpected, previously impossible ways. It also solves problems we didn’t recognize without an obvious solution. Nearly living plastic won’t be the final surprise during our lifetimes, but it’s primed to be the next.

In my talk, I described living plastic enhancing heart surgery, but I could have focused on braille, or keyboards, mice, drones, camera lenses, hearing aids, band-aid insulin pumps, capacitive batteries, bullet-sized tasers, electro-caloric heat sinks, ultrasonic tape, or woven sensors in clothes. The technology is already functional, but will see centuries of rehashing to creatively morph our world. It matters now because it will happen soon. It matters now because the pace of change is becoming mind-boggling, even for those of us now who are accustomed to surprise.

What advice would you give to other aspiring innovators and entrepreneurs?

If you are a young innovator, protect your naiveté and practice inception. As a budding innovator, you may find mentors and peers willing to help. I am sorry that their advice may be your greatest early challenge.

Any new skill takes repetition to master. Innovation by its nature should always yield conflicts with existing knowledge. To learn from a mentor’s advice, you must repeatedly sacrifice ideas. The sacrifice is active. It’s more than presenting concepts for appraisal. Ask your subject to share what their thoughts were just prior to their objection. Decipher the types of mental connections they used to crunch your idea, rather than source material. Meditating through and duplicating their thought process will permit you to absorb the strongest mental tools they have demonstrated. Repeating this process with diverse and accomplished people will allow you to compound the strengths of your mentors. In the end, the most important outcome is protecting your willingness to re-engage in deconstruction. Your naiveté makes your ideas vulnerable to overcorrection, and you must resist the social shock and keep practicing.

You may be presented with a plethora of unseen obstacles, a weakness of founding knowledge, an unrealistic sense of time, challenge, or concept placement in the existing landscape. All of these are irrelevant. The quality of your ideas matters only when you are primed to strike out and implement. Until that time comes, your goal should be to propose endless concepts. Exercise, through repetition, the mechanics of inception. The plentiful resource of criticism is not a crucible for your sword of conquest; it is, in fact, the hammer you wield to pound your innovation into shape.

The Promise of Personalized Medicine: Q&A with Gary Conkright

At TEDMED 2014, PhysIQ CEO Gary Conkright shared his perspective of how personalized, quantified health data is vital to preventing disease.  PhysIQ was recently selected to collaborate with USAID in their efforts to use such techniques to potentially control the spread of Ebola.  We reached out to Gary to learn more.

"Today, we’re on the verge of the next transformation in healthcare: Quantitative Medicine 2.0" - Gary Conkright, TEDMED 2014 [Photo by Brett Hartman]

“Today, we’re on the verge of the next transformation in healthcare: Quantitative Medicine 2.0″ – Gary Conkright, TEDMED 2014 [Photo: Brett Hartman]

What is the legacy you want your talk to leave?

I hope that my talk inspires just one entrepreneur to think “outside the box” to innovate a new medical device or procedure, or one physician to dare to adopt a “non-traditional” medical approach to deliver the best care and help prevent a preventable illness.  Failure should not be an option.

Speaking of thinking outside the box, can you tell us more about the work you are doing to help combat the Ebola crisis?

In my TEDMED talk, I spoke about how the next transformation in healthcare is quantified, personalized medicine.  This involves the comparison of a person’s physiology to their own unique baseline instead of population-based norms, like 98.6 degrees for “normal” body temperature. It is now possible to build a personalized baseline and to detect subtle but very important changes in one’s physiology, thereby enabling an early clinical intervention.  Seeing the potential of this approach, The Scripps Translational Science Institute recently asked PhysIQ to work with them alongside USAID to help address the Ebola crisis in West Africa.

One of the reasons why Ebola is so difficult to contain is that once someone is infected with the virus, they become contagious well before any symptoms appear.  Currently, the best Ebola risk management protocol requires patients to self-manage by taking their temperature twice a day. However, as with many diseases or exacerbations, the human body’s natural defense and self-management system kicks in to fight this virus almost immediately to protect and sustain the body, and ultimately life. These defense mechanisms manifest themselves in changes of easily measured vital signs like heart rate, respiration rate and blood pressure.

However, these same vital signs normally vary quite dramatically throughout the day as a person goes about their daily living.  For example, when asleep, a heart rate of 40 beats per minute could be considered “normal” as would a heart rate of 120 beats per minute after walking up a few flights of stairs, but someone’s heart rate can be “within the normal range” of 60-100 but still be a sign of physiologic decompensation if inappropriate in the context of other measured parameters.  These normal dynamic fluctuations can mask the subtle changes that are a direct result of the body’s defense response.

When we holistically compare these multiple key physiologic parameters to the person’s unique baseline, the expected or “normal” physiological response can be removed, leaving the abnormal response that is fighting the disease.  We will soon start field testing in West Africa to validate this approach, which – we hope – will work for any progressive disease where early detection can save lives.

What advice would you give to other aspiring innovators and entrepreneurs?

The mystique of entrepreneurship excites the human spirit, but bringing a disruptive innovation to market is very hard work, and not for the faint of heart.  The highs are exhilarating and the lows are harsh, and the cycle time between these two extremes is often very short.  But, for those who are passionate about making a difference, and who have the risk tolerance, emotional fortitude and – perhaps more importantly – the support of family, there is no better career option.

Tell Us: What’s Your Medical Metaphor?

Do you have a barking cough or butterflies in your stomach? Are you waging a war against an army of bacteria? Perhaps you are approaching life with chronic disease as a marathon, not a sprint – with bumps in the road on your journey to health.

Whatever your health condition, TEDMED 2014 speaker and physician storyteller Abraham Verghese believes that medical metaphor is key to better understanding what’s happening in your body. Studies show that when physicians use metaphor, patients are more satisfied with their communication. In his TEDMED talk, Abraham encourages patients and healthcare providers alike to invent metaphors to help bridge a widening communication gap.

“It’s a peculiar atrophy of the imagination at a time when our scientific imagination knows no bounds. I think our right brains are churning, wanting to label and make colorful and to connect, but the imagined constraints of science and data have introduced a peculiar self-consciousness.” — Abraham Verghese

Now, it’s your turn. In his blog post, Abraham invites you to create more eponyms, more metaphors, and more colorful ways of capturing this incredible time we live in. So we invite you to tell us your favorite medical metaphor – or create one of your own – tagging it with #mymedicalmetaphor via Twitter. Or, if your metaphor goes beyond the boundaries of 140 characters, try tagging it on Facebook or any other platform you use.

Next week, Abraham will choose his three favorites. If your metaphor is selected, we’ll send you a copy of Abraham’s book, Cutting for Stone.

Go on – flex that right brain. Good luck!

What gets your heart racing? Q&A with Foteini Agrafioti

At TEDMED 2014, Foteini Agrafioti raised concerns about today’s passwords and IDs, and shared how your body may provide easier, and more accurate, forms of identification. We reached out to her to learn more about what inspires her work.

"The million dollar question is are biometrics secure? James Bond would have you believe so." - Foteini Agrafioti on the TEDMED 2014 Stage [Photo: Kevork Djansezian]

“The million dollar question is are biometrics secure? James Bond would have you believe so.” – Foteini Agrafioti on the TEDMED 2014 Stage [Photo: Kevork Djansezian]

 

What motivated you to speak at TEDMED?

I felt the need to provide a different perspective on biometric security. Our world is evolving so quickly, and biometric authentication has made its way into our lives. I want people to understand the challenges, limitations and implications of this technology.

Who or what has been your main source of inspiration that drives you to innovate?

There is no specific source of inspiration. I go by two rules: 1) never get comfortable and 2) surround myself with people who want to disturb the status quo. It all starts with crazy “what ifs…”. We then quickly test those hypotheses and that’s how the innovation journey begins.

What advice would you give to other aspiring innovators and entrepreneurs?

Obsess! If you are to challenge the status-quo, you had better obsess about it. Protect your vision in the face of abundant skepticism and never give up. You won’t make an impact just by trying – you must go all the way. In the last decade, I can recall many times that people told me that I was set up for failure. Wouldn’t it be a shame if I had believed them?

What’s next for you?

After leaving Nymi, I joined Architech and founded Architech Labs to do research in the area of human computer interaction. My vision is to build technologies that understand the underlying factors of human behaviors and habits. I am now experimenting with affective computing – the engineering field that studies the human emotion. I believe that emotional intelligence is the last barrier to meaningful human-computer interaction and I am thrilled to be working on this.

Announcing TEDMED 2015

We’re thrilled to share some exciting news with you: the venue, dates and theme for TEDMED 2015.

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This year’s event will focus on Break<ing>Through the status quo and celebrating the typical, the atypical and the spaces in between as we come together to shape a healthier world.

The mythology of a “breakthrough” tells the story of a lone genius and one magical, “aha” moment. But, let’s not mistake a good story for the truth. In reality, we all have breakthrough potential and the least likely way to unlock that potential is to toil away in social or intellectual solitude. Instead, we break through in new combinations and we collect the building blocks of our future breakthroughs every day, in every new interaction, in every new insight, one improvement at a time.

This year we’ll explore…

  • breaking through the silos that prevent different disciplines from sharing problems and insights;

  • breaking through glass ceilings and closed doors that hold back some women and minorities from entering medical research;

  • breaking through national and cultural boundaries;

And, breaking through old assumptions to explore new science and new visions of what’s possible – in ourselves, in our work and in the world at large.

We invite you to join us and secure your spot at TEDMED 2015 today.

Our home in 2015: Palm Springs, California, November 18-20

The venue this year in sunny Palm Springs, California inspires a new vibe that we hope you are as excited about as we are. A more collaborative setting and design will help speakers, delegates and innovators come together and explore the important topics and themes the stage program brings forward in a more connected way than ever before.

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Of course, our gathering will include the brilliant talks you’ve come to know from some of the most inspiring change-makers both inside and outside of health and medicine, as well as stunning artistic performances and transformative innovators. Our recently formed Editorial Advisory Board – made up of rock star movers and shakers hailing from health and medicine as well as the worlds of business and technology, foundations and academia, philanthropy and design, and journalism and communications – is hard at work helping us shape a diverse and inspiring stage program.

Connecting across the world: TEDMED Live

As always, a vital part of our mission is to ensure that all stage content is accessible to the broadest community possible. Through TEDMED Live our content is free for teaching hospitals, medical schools, non-profits and government agencies around the world, building on last year’s participation of 200,000 remote participants in 140+ countries.

We invite you to join us in Palm Springs this November – visit www.tedmed.com for more information, or click here today.

A week of health and medicine #news from @TEDMED

These are the stories that we shared with the TEDMED community this week – read them again or if you missed them, you’re in luck! Follow us on Twitter to get daily updates.

@TEDMED

Could this gaming platform based on tech from the Gazzaley lab become first FDA-approved video game?

TEDMED 2014 speaker and filmmaker Tiffany Shlain talks about how we can unlock the unique potential of the human brain

TEDMED 2014 speaker Josh Stein uses smart med devices to positively influence patient behavior

New paper on ways to address adverse childhood experiences

More on how TEDMED 2014 speaker Marc Koska is helping save lives around the world w/his single use syringe

#GreatChallenges

Tailored safety-net programs to minimize institutionalizing patients with mental illness

“Basket studies:” a “new breed” of studies are providing a faster way to try drugs on many cancers

“Exploring the supposed contradiction between America’s healthcare costs & and its health outcomes” 

Teens eat better when the motivation is tied to something they’re passionate about 

Idea that kids should eat “bland, sweet food” is an “industrial presumption” 

“12 companies leading the way in digital health”

Bionic reconstruction allows the mind to control a hand after amputation

Wathc the recast of the GreatChallenges G+ Hangout event on patient experience

The CDC says we could cut the HIV transmission rate by more than 90%

Using training and technology to avoid nurse injuries at the VA

Enhancing the role of the patient in the drug review process, with Congress?

“Plain Cigarette Packs May Deter Smokers, Studies Show”

Should generic drug makers update medicine labels when they learn of safety risks?

Add your voice to the Beryl Institute’s global conversation about the state of the patient experience

Mindfulness training on your smartphone

“CHIP reauthorization is…a harbinger of things to come with future ACA battles”

“Federal study: Foster kids struggle to get health screenings”

What could the Supreme Court challenge mean for the Affordable Care Act?

Recast of the discussion from Robert Wood Johnson Foundation on how we can help all kids grow up at a healthy weight

How social media is changing suicide prevention

Reducing air pollution improves children’s lung health during a critical time

Study highlights importance of exercise, even for those w/identical genes & nurturing 

Measuring the Value of Patient-Centered Care: Last Week’s Hangout Participants Address Unanswered Questions

Is it possible to measure the value of patient-centered care? Last week, as part of TEDMED’s Great Challenges Program, a multi-disciplinary group of experts moderated by Boston NPR Health Care Reporter Martha Bebinger, discussed the rise of patient-centered care, explored how we can standardize its measurement to encourage evidence-based policy changes, and touched on what those potential policy changes might look like.

If you weren’t able to join us, check out the recast here:

Thanks again for taking to social media to submit your questions and comments! We had such wonderful questions that an hour left us short on time to address them all. So, we asked a few of our panelists, Steven Horowitz, Alyssa Wostrel and Alex Drane, to offer their perspectives on several remaining questions. Read on for their thoughts:

What are the pros and/or cons of relying on patient or healthcare provider self-reporting of patient-centered care?

Steven: The patient’s assessment of pain and suffering is the gold standard for this measurement. This may be influenced by behavioral problems, addiction or mental illness. How many patients have these problems may vary significantly from community to community, thus survey results may be difficult to compare between geographical regions. In terms of the healthcare provider assessing his or her own performance, I’m reminded of one comedian’s line: “85% of car drivers consider themselves above average.” Many surveys show discordance between what healthcare providers consider important and what patients and families consider important. That does not mean the opinion of the healthcare provider is not helpful. However, the experience of the patient essentially defines the concept of patient-centered care.

If we encourage heavy focus on data (such as survey results), should we be concerned that it may take the attention off of actual patient care? Is there a chance that meeting the specific numbers might not equate to care that is focused on the patient?

Steven: Good question! Surveys and other assessment tools are critically important to generate the data we need for continuous quality improvement. This data keeps us on target for addressing the needs of the patients, however, when these results are blindly tied to pay and promotions there is great potential healthcare providers may inordinately focus on survey results to the exclusion of other important considerations.

Alex: It depends on what you are surveying! Historically, the industry has focused on measuring things that are clinical in nature – these are important indicators of overall health, but may themselves be just markers of other issues. For example, maybe my blood pressure is high because I hate my boss and dealing with him makes my heart race. You can tell me to work on managing my blood pressure or eating better, but if you don’t know why those things are happening, you’re squeezing a water balloon. If, on the other hand, you were asking me about my workplace stress and I told you it was high, then you could provide me with some resources to help, and we could begin to track how well they were working against, let’s say, a goal of a 30% improvement. If workplace stress is what’s making me unhealthy, then reducing my workplace stress by 30% would equate to care that is very much focused on me. We all know the old adage “you can’t manage what you can’t measure” – we need to measure the things that matter so we can manage them. 

If we achieve a standardized measurement system for patient-centered care, do you see a place for rewarding healthcare providers who consistently deliver this type of care? If so, how might that work?

Steven: Healthcare providers, or better, teams of healthcare providers, should be rewarded for consistently outstanding results in patient-centered care. The difficulty remains, however, that high achievers may represent healthcare providers adept at gaming the system or, more hopefully, healthcare providers who have created an outstanding culture of patient-centered care that any assessment would identify. 

What steps can patients take to ensure the care they receive is tailored to them?

Steven: Patients need to ask critical questions, speak to current patients if they are allowed to, review standard healthcare and physician grading systems to identify flaws, and most importantly, avail themselves of the many electronic resources available about how to become a successful and informed patient.

Alex: This is one of the easiest, and hardest, questions in all of health care. The concept of what we can do is enormously straightforward: become empowered, get informed, stand up for what we care about, demand care that is commensurate with our values and beliefs. But oh boy, that can be hard to do. I’m the queen of walking into a doctor’s office ready to demand this and that – only to slouch out, tail between my legs, with none of my original goals shared, acknowledged, let alone addressed. Whose fault is that? On some level, it’s mine. Slowly, with time, with sharing enabled by new technologies, with shifting demographics and new “norms,” we will rise up and demand to be equal participants in our own care – and we will be happier, healthier, and all the more productive (providers, too!). A great low-hanging fruit as we transition from one end of the spectrum to the other is to become an advocate for someone else’s health – bit by bit, if we all commit to do this for each other, we’ll help speed the arrival of a new normal where collaborative, empathetic, holistic care is rarely the exception.

Some argue that medical care is meant to cure – not to cater to patients. What would you say to those who purport that sometimes, the patient isn’t right and needs to be sternly told what to do? 

Steven: In conversations with patients I try to be as supportive and understanding of their concerns as possible, but I’m very clear about my own interpretation of the literature and what I think is in the best interest of the patient. At times I will tell a patient that we are dealing with two separate issues that are interrelated: the healthcare condition that needs treatment and the the underlying fear that may cause denial. It’s at these moments when I express my concern that the emotional component may interfere with the patient choosing the best medical option.

Alyssa: This question suggests a controlling and patronizing role may be successful and necessary in reaching the “cure.” One of the key problems with this approach is that it denies the patient involvement in and accountability for their own health and well-being.

Alex: We’ve all read the literature showing the more collaborative and shared the decision-making is, the better the outcomes. There is also increasing evidence that outcomes in situations where a provider shows empathy trump those where they do not. The days of old-fashioned paternalistic care are coming to an end…all hail the new day!  Look at the extraordinary success of efforts like “Open Notes” at Beth Israel – “Nothing about me without me.” Now – is it true that there might be some souls who, when asked, request an extremely militaristic approach to care delivery? Sure! But then it would be their choice.

What is the best solution for keeping patients engaged and involved? 

Steven: It is important to be respectful and empathic and meet the patient where he or she is now. Encouragement and praise for the patient starting to take responsibility for understanding their condition and becoming proactive is often a turning point in their care.

Alex: If I’m pretty sure my husband is cheating on me and I just got fired…do I really have the capacity to focus on my diabetes? We need to expand the definition of health to include life – because when life goes wrong, health goes wrong. Not only do life challenges sap our capacity to care for ourselves in traditional ways (eating well, taking our meds, exercising, sleeping, taking care of our preventive screenings…) – they actually make us sick as well. Solve the problems real people want solved, redefine “vital signs” to include what is most vital. Meet us in the messy realities of our lives, where we live, work, and play (or pray!) – and not only will we engage, we’ll finally be enabled to make real change to our health. I recently had the great fortune to work with RWJF on their Pioneering Ideas effort, and through that was introduced to the work of Sendhil Mullainathan out of Harvard. Sendhil talks about the difference between something being important and something being urgent. Going to the gym is important – making sure your marriage isn’t collapsing is urgent. Given his additional assertion that time and attention are scarce commodities – how do we incorporate the reality of “attentional real estate” in our attempts to foundationally impact health?  He’s building some super sexy tools to help – so listen here when you get a chance: RWJF’s Pioneering Ideas podcast.

How do we involve patients in crafting policy changes for patient-centered care?

Alyssa: Including patients on hospital and community health center boards and committees to hear their feedback and to involve them in finding and implementing solutions has gotten excellent results.

Dr. Selby observed that measuring patient experience is difficult to do via objective measures (which I think is true). Yet clinicians often show reluctance to embrace subjective assessments. What can be done to change this culture? 

Steven: This is also an excellent question! There are several ways this can change. One is the continued tying together of surveys with critical outcomes. This may include freedom from suffering, duration of illness, complications of treatment and longevity. The ones that I feel strongly about, for which we have barely put a toe in the water, include objective laboratory assessments of inflammatory markers and gene expression. Although “hard” measurements, they may be influenced by “soft” intervention such as meditation, empathy, exercise, diet and sleep.