Can Design Make Health Policy Truly Patient-Centered?

Karen Matsuoka is poised to change the way the government designs and implements healthcare policy. Let’s hope she does.


Karen Matsuoka, Chief Quality Officer & Director, Centers for Medicare & Medicaid Services.

Karen Matsuoka, Chief Quality Officer & Director, Centers for Medicare & Medicaid Services.

Karen Matsuoka knows what bad health policy feels like.  At 8 years old, she was diagnosed with Type 1 Diabetes – a rare form of the disease. Matsuoka’s regimen required her to get insulin shots every day at noon. But the public school she attended had a rule that no injections were allowed on campus unless they were administered by a nurse, and the district could afford a nurse only two days a week until 10:30 a.m.

“I was put into a situation where I had to choose between my health and my education,” Matsuoka said. Instead, Matsuoka’s mom drove to school every day at noon and pulled her out of class for her injection. Eventually, she enrolled in private school.

“Think about the child who can’t afford that option,” Matsuoka says. “When the school district instituted that policy, they didn’t mean to cause problems but it just didn’t work. So I learned from a young age that policy is often not designed in a patient-centered way, despite best intentions. I knew we really needed to do things differently.”

Matsuoka is working hard to do just that. As Chief Quality Officer for Medicaid and CHIP (the Children’s Health Insurance Program) & Director of the Division of Quality and Health Outcomes at the Centers for Medicare & Medicaid Services (CMS), she’s positioned to have a powerful impact on the lives and wellbeing of patients across the country.

And she’s convinced that human-centered design is the way to get there.

How did Karen Matsuoka arrive at this point?

Her background is heavyweight. With a B.A. and M.A. from Stanford and a Ph.D. in Social Policy from Oxford, she’s got the intellectual chops to take on just about anything. She’s served as a health economist and policy analyst at the White House and in Congress as a Presidential Management Fellow for the Ways & Means Committee’s health subcommittee. And she served as the Director of Health Systems and Infrastructure for the state of Maryland, where she was in charge of key health reform initiatives including the Maryland State Innovation Model – a project tasked with redesigning the state’s healthcare system to be just as effective at keeping people healthy as getting them well once they’re sick.

But what’s striking about Matsuoka goes deeper than her professional credentials. It’s the heart, insight and sensitivity with which she approaches healthcare challenges. She knows that people’s entire lives and families are at stake – and that government policies, while well-intentioned, can create more burden and hardship if they’re poorly designed.

So when she heard from a White House colleague about a fellowship program at Stanford’s Hasso Plattner Institute of Design (the d.school) that immerses professionals in design thinking, she leapt. “From the get-go, I intuitively understood why human-centered design was important. It didn’t require any convincing at all.

“It dovetailed with my feeling that we needed new approaches to address the failings of the healthcare system.”

The potential of design in healthcare is endless.

Design thinking is a process that immerses interdisciplinary design teams in the lives of their users to identify unmet needs and problems. The process as conceived at the d.school includes 5 stages – empathy, define, ideate, prototype, and test. It’s part of the standard vernacular in Silicon Valley and other forward-thinking pockets of the world, and has been adopted by many innovative companies including SAP, Google, IBM, Fidelity, Intuit, GE and more. But – surprise – change is slow to take place in big bureaucracies, and the U.S. government is no different.

“I feel like government is the last bastion,” Matsuoka says. “Design thinking has permeated every other sector. We’re the last ones. There are pockets of design thinking happening across government but it’s still regarded as a novelty rather than the norm.”

In fact, Matsuoka had to quit her job with the Maryland Department of Health to come to the d.school because her former boss was unsupportive. “The word ‘design’ or ‘redesign’ was in the title of almost every project I was working on. I was being asked to think and act like a designer but without any training in design, so I was stunned by the failure to see the value in this fellowship.” But Matsuoka saw the Stanford d.school opportunity for the win-win it clearly was: “a chance to get coaching from the world’s greatest designers in applying proven approaches to health care redesign for our most vulnerable residents.”

So she jumped ship and moved to Palo Alto to spend a year at the d.school to hone her skills in the process of design thinking developed by David Kelley – among the world’s leading design innovators. She was intent on finding ways to bring a human-centered approach to systems change and policy.

“Design unlocks the kind of ideas and approaches that truly get us to the patient-centered care that we policymakers talk about all the time yet struggle to realize. Imagine if we could do for health care what the iPhone did for cell phones or the Mac did for personal computing. Design thinking was behind those innovations, and arming policy makers with these tools would be huge for health care.”

Matsuoka thinks that if government can do any of the 5 stages of design well – even just a couple stages – the impact on the health care system and its outcomes could be profound. If the government could do all of them, “the potential is immense. It would unleash innovation potential in government.”

But for innovation to truly happen, Matsuoka thinks the typical federal policy-making model will need to be flipped on its head.

“Federal policy making tends to be a top-down process and assumes that simply changing how we pay for things will lead to patient-centered care. In my experience, payment reform is necessary but not sufficient. You also need people on the ground to figure out what patients actually need and want, and that’s where design thinking comes in.

“Before the d.school, I thought I was patient-centered, yet I’d never actually interacted directly or intensively with patients as part of the policy making process,” Matsuoka says. “But to create effective policy, you need to understand who you’re designing for. I’ve learned from my time at the d.school why it’s not enough to field surveys and hold focus groups, which is the way we traditionally do things in health services research and policy circles. Human needs and values can be incredibly complex and run really deep, making them hard for patients to articulate.”

For that depth of understanding, Matsuoka believes you need the ethnographic empathy tools of design to fuel small pockets of innovation all across the nation to test solutions in a hyper-local way. “Unleash designers across the country to test many possible micro-solutions on a small and low-cost scale in order to find the ones that patients truly need and want,” Matsuoka says, “and then use the tools of policy to scale and financially sustain them."

“How do we keep people out of hospitals? How can government work upstream to keep people healthy? This is the next critical stage for healthcare, and it requires all of us to work with people we haven’t worked with before.”

And that’s another reason why Matsuoka is so passionate about bringing design thinking to health care reform. “There’s something about the process that builds trust,” says Matsuoka. "When you’re working closely with people and collaborating to solve the problems of very vulnerable users, emotions and experiences are often shared in a way that’s intense. Design teams come out of the process feeling like they’ve known each other their entire lives even if they’ve only been working together for a few weeks. That’s incredibly important now that we’ve come to recognize the role of social determinants of health and how critical it is for health care providers to collaborate with community partners they haven't traditionally had to work with, like schools, prisons, social services, and public health departments.”

Matsuoka likes to imagine a situation like the TV show “Undercover Boss,” where the people who design policy could immerse themselves in the lives of the people for whom they design. To have people live the policy they’ve created to see what works well and what doesn’t work well. 

“I don’t know if policymakers fully appreciate the reality of the people they’re trying to serve, which is why it is so risky to assume you know what patients need and want” Matsuoka says. “My team has begun doing empathy interviews with Medicaid beneficiaries, and their stories are heart-wrenching.

“How cool would it be if we could co-design together?”


Design Thinking vs. Lean vs. Agile

Many hospitals have adopted Lean as a management tool, and have found it effective. When do you use design thinking and when is Lean more appropriate? Here’s Karen’s response:

“A good friend of mine heads up CMS’s Lean activities but also intuitively understands and appreciates design. We discuss the differences. What we’ve settled on is that it depends on the level of uncertainty. If you have a solution that is already working – for example, you’ve tested it and have confirmed that it’s desirable and feasible, and it’s demonstrating good results – and you’re just trying to make it more efficient by getting the waste out of a process, you use Lean. If you want to design something new or completely redesign something that isn’t working, you use human-centered design – you need to start with a blank slate and with the user to make sure that the solution you’re designing is desirable and usable. Agile is somewhere in between. The emphasis with Agile is on prototyping and testing, but Agile doesn’t really do the first 3 stages of empathy, define and ideate. If you really don’t know the problem or the solution, you need to start with design.”

“We’re Not Tied to a Legacy Model of Medicine”

Stacey Chang is working to redesign healthcare at the Design Institute for Health in Austin.

Executive Director of the Design Institute for Health Stacey Chang, left, with Managing Director Beto Lopez.

Executive Director of the Design Institute for Health Stacey Chang, left, with Managing Director Beto Lopez.

Stacey Chang’s career reads like a history of the design movement. A mechanical engineer with degrees from MIT and Stanford, he joined the design firm IDEO in the late ‘90s, serving as the very first intern in its Boston office. What followed was more than 15 years when he was in and out of IDEO three times, stepping away to do cool things with a couple of medical startups as the firm evolved into a global force that moved from product design to the design of experiences, services, organizations and systems.

“We worked (at IDEO) in the design of hospitals, insurance, some pharmaceutical. I developed pediatric surgical instruments – I mean, that was the top of the mountain, robotics in surgery – but oddly I began to feel that I wasn’t having the kind of systems impact needed in healthcare,” Chang said. “Design consulting can be really fun and we started demonstrating huge impact through design. But we were never able to shift the system as a whole – only pieces of the system. That was the frustrating part.”

Chang is in a new place now – one where he can face down the kind of systems change that nagged him for years. He left IDEO for the last time in 2014 to become Executive Director of the Design Institute for Health at UT Austin. And though the world of academic medicine may not seem like an obvious next step for a design pioneer and entrepreneur, Chang’s new gig looks like his biggest play of all.

A joint program between UT’s Dell Medical School and its College of Fine Arts, the Design Institute is a first-of-its kind initiative dedicated to applying a creative design-based approach to the nation’s healthcare challenges. Funded primarily by the medical school, the institute engages not only in design education and research, but various hands-on consulting and development projects with the Central Texas healthcare system.

We were never able to shift the system as a whole – only pieces of the system. That was the frustrating part.

A true product of Silicon Valley who wants to do good and get things done, it took only one visit and meeting with inaugural Dean of Dell Medical School Dr. Clay Johnston for Chang to be hooked on the job and its vision.

“I knew Clay from UCSF – he was a clinical translational scientist, doing precision medicine, price transparency and policy work in California,” Chang said. But Johnston framed the confluence of circumstances in Austin as a rare chance to make change happen.

“Austin is a bright blueberry in a bowl of tomato soup – an unusual place within the red state of Texas that has the largest uninsured population in the country,” he said. “I really think it’s a once-in-a-lifetime opportunity.”

If you don’t already know it as the most liberal city in Texas and one of the most fertile cultural hubs in the U.S., here’s a piece of news that tells you something about the community of Austin. In 2012, the city voted on a ballot proposition to raise property taxes by 63% in order to rebuild the county hospital, create a new medical school, and make healthcare services available to the uninsured. In a nation where most academic medical centers are complicit in the dysfunction of the service system – and where preventive care in communities is disincentivized – the opportunity to create something new was great.

“We’re not tied to the legacy model of medicine,” Chang says. “We can move straight to value-based care, to positively impact the health of the community – because the community paid for our creation.”

The Design Institute of Health is approaching this opportunity with three big projects:

1.     Clinical – The design of the new medical clinics in a way that’s expected to fundamentally change the patient-provider relationship to give patients control and agency, enable them to learn, and for providers to eliminate hierarcy to create more collaborative workspaces. They also aim to reduce waiting times and create a more compassionate atmosphere within the clinics.

2.     Community – A new development in East Austin where the community requested affordable housing and access to green space, schools, and health. “They didn’t ask for a clinic,” Chang emphasized, “they wanted to know how to be more healthy.” The Design Institute is part of a multidisciplinary group including, among others, the head of Epidemiology from Johnson & Johnson, the Thinkery (Austin’s readically popular children’s museum), and local artist Jennifer Chenoweth, who created a project called “XYZ Atlas” that uses GPS coordinates to map emotions to place by community members. “This is the kind of stuff we came to Austin to do,” said Chang.

3.     Organizational – The design of the medical school itself, which includes a cross-fuctional collaboration between traditional clinical departments. “This kind of stuff doesn’t often happen in other institutions,” Chang said, “because budgets aren’t shared. Here, a significant part of the overall budget is dedicated to only central projects. In the realm of academic medicine, it’s huge.”

How does all of this get to the core of Chang’s earlier frustration and ambition to create systems change in health? Austin has already become a vanguard, serving as a model to other institutions interested in changing the model of health for communities.

“Long-term, design is just a component of a shift that I hope remakes health for society,” Chang said. “Of all the basic needs, health is an experience that everyone shares. It’s uniquely emotional and we experience it across divides in similar and significant ways. We have a chance to demonstrate that we can bring a lot of stakeholders along to collaborate on a courageous experiment to show better outcomes.

“Central Texas is the sandbox but the goal is to have a broader impact on society. We’re here because this represents the coalescence of the aspirations we’ve all pursued. “

Learn more about the Design Institute of Health.

 

Mapping Your Inner World

They call her a Human Experience Cartographer. Artist Jennifer Chenoweth is mapping community wellbeing in a way that just might blow your mind.

It’s one of the coolest things we’ve come across.

A project that geolocates spots in a community based on the emotional experiences shared by its residents. XYZ Atlas uses story and technology brilliantly to map collective experience in Austin, Texas.

But artist Jennifer Chenoweth didn’t set out to blow your mind. She was simply interested in why people call a place home, and the strong sense of connection to place among those who live in Austin.

Artist Jennifer Chenoweth

Artist Jennifer Chenoweth

“Most of what happens in the art world is a chess game of insular thinking,” she said. “It’s not understood unless you’re a PhD. I pursued art to use the freedoms that I have as a free thinker to inspire others.”

Be glad she did. Picasso once said that the purpose of art is “washing the dust of daily life off our souls.” But Chenoweth takes that dust and gives it a life that speaks of everyday experience in a way that surprises and unites. The project provides a rich snapshot of community wellbeing through intimate stories of identity that both touch and compel those who encounter it.

The genesis of Chenoweth’s projects was a simple color wheel based on psychologist Robert Plutchik’s theory of emotions from the 1970’s. One of Plutchik’s followers assigned it to a color spectrum, which Chenoweth enhanced. The chart, she said, helped her understand emotional wholeness – how all of an individual’s feelings and experiences contribute to being “whole.” Through an interactive question-and-answer series, 503 participants answered a 20-question survey about their life experiences and where they occurred, and thousands more participated in scale-mapping events. The locations were then captured in a mapping system – an X, Y point – and coded to an emotional color on the chart. A Z point indicates whether an experience was positive (a spike on the map) or negative (a valley or drop).

What resulted was an emotional topography of Austin that captures the fabric of community through story. The idea is that when emotion is connected to location, location is no longer space, but place. And place matters. It provides context for the story of our lives, providing a sense of identity and meaning. Place holds our pain and longing, triggering memory or aspiration.

Chenoweth also discovered the work is an active tool for wellness. The map doesn’t tell just the story of happiness, but presents the experience of emotions as a way to understand and accept one’s self, to frame and help healing over trauma. The variety of responses amazed Chenoweth.

“I could get lost in thought for hours, the moral reflection that these stories led to.”

Chenoweth discovered that positive experiences happen in many places, but negative or tragic experiences– a betrayal or abuse – are rooted to a single place.

For example, many people reported positive experiences around a community park – stories around humanity, nature, or love – but traumas are more likely to occur as islands.

“We collectively have positive places but individually have negative places,” Chenoweth said. “Happiness is more about simple joys whereas trauma can wreck your life in one fell swoop.”

Grief occurred most often around the local jail and airport – sunken holes on the map. The bar district was another low point – an area where people lost control or had regrettable memories. The old county hospital also had a lot of negatives associated around the lack of care, waiting, and the way in which people were treated.

“I learned amazing things,” said Chenoweth. “There’s no sound bite to capture it, but there are examples. I took a sculptural representation to SXSW, hanging art with paper and digital surveys and allowing people to walk around and answer the questions with stories. The field opened up with colored flags. One person was on the field for more than an hour and at the end said to me, ‘Thank you. I really needed to do this. I’m in rehab for heroin addiction and I needed to understand how I got here.’”

Since Chenoweth has unleashed XYZ Atlas to the world, others have started to run with it: a local landscape architect is collating stories around bodies of water to map things to the urban landscape; teachers are using the questions as writing prompts to explore difficult topics; and Chenoweth received a second commissioned project on a 12-block section of downtown Austin as well as support to take the project to adjacent cities to do urban planning with minority populations and share their stories.

The Design Institute for Health in Austin is also looking into a project to map patients’ experience around waiting, and institute Director Stacey Chang nominated Chenoweth to do a TEDMED talk. She’ll be speaking at the conference in Palm Springs in November on how her interactive public art project gives individuals and communities an opportunity to be stronger and healthier.

Chenoweth seems a little overwhelmed by the response. “I meant to do this as an art show,” she said. “I’m an artist working for free! I don’t have expertise in these things.

“But it’s delightful and exciting,” Chenoweth said.

Chenoweth is happy to connect with others interested in collaborating or supporting her work. She specifically could use an engineer to help her develop her digital platform around the project. Interested? You can reach out to her through her website: http://www.xyzatlas.org/contact/

 

 

3 Things ...

In keeping with the interdisciplinary and creative nature of our work, another "3 Things" that recently brought us delight and/or wonder. Enjoy!

Medical humanities as an academic discipline originated about half a century ago, along with scientific and technologic progress in medicine that altered our understanding of what it means to be human. We love this essay on “Healing Arts” by Dr. Audrey Shafer, the Founder and Director of Medicine and the Muse at Stanford. And this killer quote from the essay: “The arts, humanities and social sciences teach us both to look outside of ourselves and to look within: to explore, examine and record what it means to be human. What do health, illness, suffering and healing mean? What is caring? What is the experience of exhaustion, loss and grief? Such inquiries enable us to think critically about what we do, what we say, how we affect others, how our relationships are tied to our choices and perspectives, and, ultimately, how we live.” This lovely essay shares one physician’s perspective on how the arts have enriched her practice of medicine.

Healing Arts: The Synergy of Medicine and the Humanities

"We Are Alfred"

"We Are Alfred"

Virtual Reality is way more than just technology for guys to nerd-out to. There are all sorts of new horizons for experimentation. In healthcare, the promise of virtual reality for no-risk clinical training has already borne out for some institutions. But its potential for deepening empathy and understanding among patients, providers and family members is especially powerful. Embodied Labs captures this powerfully in “We Are Alfred,” an empathy-training exercise that uses virtual reality to teach medical students about the aging experience from the first-person patient perspective of an elderly man named Alfred experiencing audiovisual age-related changes. “Working in this medium can unleash your imagination," says one of the creators. Maybe it can also unleash kindness and compassion.

Watch "We Are Alfred" 

"There are moments that cry out to be fulfilled ..."

"There are moments that cry out to be fulfilled ..."

Finally, bringing a little of the humanities to you ourselves, try Poetry Daily – a free app that brings you a different poem each day. Read it while you’re stuck in traffic, in line at the supermarket, or just need a little boost for your soul.

And enjoy this short poem by Mary Oliver.

 Moments

There are moments that cry out to be fulfilled.

Like, telling someone you love them

or giving your money away, all of it

Your heart is beating isn’t it?

You’re not in chains, are you?

There is nothing more pathetic than caution

when headlong might save a life,

even, possibly, your own.

Virtual Reality: An MVP in Healthcare Innovation?

Imagine what it’s like to experience dementia or a visual impairment – what life really looks and feels like from inside that world.

Or imagine simulating a live surgery as a medical student, holding the scalpel in your hand, hearing the voices of your medical team around you, surveying the choices without risk of harm or mistake.

With advances in virtual reality, you can. The applications for the technology are leading change in the industry by offering enhanced training experiences and experiments in empathy by actually transporting viewers “into another’s shoes.”

It’s a safe bet to say that virtual reality has the potential to alter healthcare in profound and lasting ways.

At The Better Lab, we’re working to advance a project that uses virtual reality to train emergency medicine, surgery and anesthesia providers on collaborative teamwork, professionalism and empathy to improve the care experience during 900 trauma activations. The hope is to develop a training experience using 360 video and immersive storytelling to help these unique teams work together with greater insight. The project is a partnership with David Sarno, of Lighthaus Inc., an award-winning virtual reality studio that has pioneered immersive experiences in healthcare and education, and media technologist Sam Stewart, who has extensive 360 video production experience and trains journalists on the use of digital tools for storytelling at Google News Lab.

Learning from David, Sam and others about the landscape around this technology has been an exciting journey.

One thing we quickly discovered: It’s hard to enter the world of VR without finding yourself at Stanford’s Virtual Human Interaction Lab, founded in 2003 by Jeremy Bailenson. Bailenson studies the psychology of VR – in particular how virtual experiences lead to changes in perceptions of self and others. His lab builds and studies systems that allow people to meet in virtual space, and explores the changes in the nature of social interaction, with recent research focusing on how VR can transform education, environmental conservation, empathy, and health.

Bailenson’s work also led him to a rich partnership with Derek Belch, a former Stanford Cardinal football kicker and assistant coach. Belch did graduate work at Stanford, and his Master’s thesis explored virtual reality applied to sports training. The results of this work led to the development of STRIVR, which created the market for virtual reality sports training.

Who does STRIVR train? Not just the Cardinals (and Cal), but the Giants, New York Jets, Dallas Cowboys, and more.

STRIVR takes a 360 camera to practice and films as close as possible to the decision maker – usually the quarterback or a linebacker. Later, when the athletes come for film study they can transport themselves back to the field to do additional reps. The video is used to get extra practice in a world where mistakes are free so that they can make the best possible decisions in real time. Or, as the STRIVR website describes it: “Unlimited practice repetitions anytime, anywhere. From the exact vantage point of where you actually play the game.”

It’s easy to see why this would lead to healthcare, where physicians and medical teams often work in high-stakes environments where seconds can mean the difference between life and death.

The work of STRIVR has been so successful that they’ve expanded to corporate, enterprise and medical training.

Although the medical space for virtual reality is much younger, the core product for training is similar – “creating virtual reality experiences that allow people to get extra reps so they can be as prepared as possible for their day jobs.”

The applications for empathy training are newer, but no less fascinating or promising. Stanford’s Bailenson did a study that put people in VR to experience color blindness, with a control group going through the same experience in 2D. Both were then given the opportunity to help the colorblind. Results indicated that the VR group spent twice as much effort to help persons with colorblindness compared to participants who had only imagined being colorblind. Those are powerful results.

The technology is also being used to understand “implicit bias” in ways people behave – not to cure them of bias, but to make people aware of bias so they can align their behavior with their values.

Other ways that virtual reality is changing healthcare?

• Relaxing chronic patients by transporting them outside of the hospital to visit a landscape in Iceland or swim with whales in the ocean

• Making children in the hospital feel like they’re at home by taking 360 cameras into their actual homes and allowing them to experience the familiar

• Helping students and physicians experience life as an elderly or impaired person to improve understanding and communication 

• Speeding up recovery for stroke victims by starting rehabilitation earlier, with patients “practicing” how to lift their arms and move their fingers with the help of virtual reality

Improving hospice and end-of-life care by helping those with limited mobility to experience life outside treatment and give them a chance to go back to places in their past that hold fond memories

It’s a tech horizon that’s reaping some big bets. In 2014, Facebook CEO Mark Zuckerberg bought Oculus VR, one of the most prominent virtual reality startups in the industry, for $2 billion. The plan? Zuckerberg expects to spend over $3 billion in the next decade to improve virtual reality and make it accessible to the masses. Today virtual reality may still linger on the margins, but future activity and growth seems inevitable – and the opportunity for innovations in health are vast.

Eric Williams, Co-Creator of OU’s Immersive Media Initiative, said it best in a recent interview: " This technology is so new that the next steps are only limited by our imagination."

We look forward to sharing our own experiences in VR in the future.

The Future of Health is Empathy

Dr. Adrienne Boissy is Chief Experience Officer at the Cleveland Clinic, host of the 8th Annual Patient Experience Summit taking place May 22-24.

Dr. Adrienne Boissy of the Cleveland Clinic.

Dr. Adrienne Boissy of the Cleveland Clinic.

The Cleveland Clinic Empathy video that came out in 2013 not only went viral – it brought tears to the eyes of stoics and cynics alike. Just under 4 ½ minutes long, the video does something radically simple – captures the internal thoughts and fears of patients and caregivers in a hospital setting. Its power lingers.

But interestingly, the video wasn’t actually intended for consumers – it was created by the Cleveland Clinic to encourage it’s over 40,000 employees to be more empathetic. Did it succeed? Maybe – but what it most certainly did do was push the concept of empathy to the fore in the debate about healthcare and quality.

This month, the Cleveland Clinic hosts its 8th Annual Patient Experience Summit under the theme “Empathy by Design,” featuring expert speakers, panel discussions and workshops representing multiple healthcare professions and disciplines engaged in exploring innovative ways to create and sustain a human-centric environment. Topics will focus on the current trends and global interest in patient experience among disciplines both in and outside of the healthcare field.

But becoming an international leader in empathy and human-centered healthcare was no quick feat for the Clinic.

“We’ve evolved,” said Dr. Adrienne Boissy, Chief Experience Officer at the Cleveland Clinic. “Ten years ago (CEO) Toby (Cosgrove) started us on this journey and we didn’t know where it would go. At the time, we had less than 10% in patient satisfaction – even though we had a reputation for excellence as an institution. It was a decade-long journey in how patients perceived us.”

How did they do it? The Clinic leads with what it calls “a culture of improvement,” using a combination of principles popular in the field – Lean, CI (Clinical Integration), design thinking – all across the system. They worked on the internal culture first, making caregivers priority #1 while focusing on safe, high-quality, high-value care for the patient.

They also designed a more robust system to evaluate process, doing a data deep dive then trying different methodologies to explore what worked.

“We had to figure out which method to deploy when,” said Boissy. “This is the future of the field. How are we going to negotiate this? What does design thinking and CI mean? What matters most?”

These are questions many are struggling with across healthcare, with Lean seeming to dominate in many environments. But the human-centered approach of design thinking is a uniquely powerful tool when it comes to determining what is right and good for the patient - and empathy governs that approach.

The Clinic’s website bears the words: “Empathy is our watchword. It’s how we view each patient who comes through our doors.” They’ve created a 360 virtual tour to show how to reduce suffering, and asked the question ‘How might we create spaces that are more healing?’ They also walk caregivers through the space, listen to patient advisory councils, and strive to engage stakeholders on every level that’s meaningful to them.

“How can we innovate, anticipate and exceed expectations,” said Boissy. “That’s where my heart is.”

Where have these questions led? Often to problems that medical professionals and caregivers may have overlooked or under-valued.

“In the end, my patients want to know how to get across the parking lot when it’s icy,” Boissy said.

At The Better Lab, we believe that it’s discoveries such as these that lie at the heart of the design thinking process. How do we measure and define patient engagement and satisfaction? What matters most to those we serve? By engaging deeply with the user, we can identify unmet needs and priorities. And by co-designing solutions with those involved in the process, we can work to make meaningful strides toward a definition and practice of health that models not just empathy, but humility.

Like recognizing that getting across the parking lot is the chief concern of a patient. Or that just getting to the hospital can be one of the biggest barriers and sources of stress for a patient and her family.

“Transportation is going to be a design disruptor,” Boissy said.

Other seemingly obvious conclusions that can have profound impact on experience? “People don’t want to wait. Stop calling the waiting room the waiting room – and have self-rooming.

 “The patient experience of the future is helping to inform patients and co-design around access, transparency, waiting, and service.”

And, another big deal: provider burn-out. “You can’t be at the forefront if you don’t talk about caregivers,” Boissy said. “54% of our caregivers are burned out.”

These are just a few of the small-big revelations that will continue to shape the future of health in our communities. There's a lot more to learn when we ask, listen, and embrace the limitations of our own experiences and perspectives.

“We have a role in modeling the empathy we want to see in the world,” Boissy said.

“We are tripping forward.”

Learn more about the 2017 Patient Experience Summit: Empathy + Innovation.

Watch Dr. Adrienne Boissy's TED talk.

 

 HEALTH INNOVATORS: Dr. Joel Kimmons of Fitwel

Joel Kimmons wants the spaces where you work to support and enhance public health. He’s helped create a system to make that happen.

Joel Kimmons was completely surprised when he learned that FastCompany magazine had named the company he had helped start one of the World’s Most Innovative Companies of 2017. As a food scientist for the CDC who grew up off the grid in rural Tennessee, Kimmons says he never really paid attention to “that type of thinking.”

But there it is – Fitwel – one of 10 companies listed among familiar giants including Nike, Patagonia, Alphabet, and Chobani.

“It was totally great,” he said. “I do think it’s well-deserved. We’re a unique program with a lot of promise.”

What is Fitwel? The quick answer is that Fitwel is a certification process for healthy buildings. But that less-than-sexy explanation fails to capture the deep and visionary thinking that has gone into the creation of Fitwel as a driver of community health.

Kimmons and his colleagues purposely created a process that allows for the application of strategies that are broadly conceived, economical and evidence-based. There are no prerequisites that are cost-prohibitive, and Fitwel’s strategies work in both existing buildings and as a roadmap for new design. And, the certification process has been designed as a web-based tool that is user-friendly, efficient and cost-effective.

In a nutshell, this is how it works:

Each strategy within the Fitwel scorecard is linked by scientific evidence to at least one of its seven Health Impact Categories: (1) Impacts Community Health; (2) Reduces Morbidity and Absenteeism; (3) Supports Social Equality for Vulnerable Populations; (4) Instills Feelings of Wellbeing; (5) Provides Healthy Food Options; (6) Promotes Occupant Safety; and (7) Increases Physical Activity. Within those categories there are 12 sections that impact the design and operations of a building, including healthy workspaces, building access and location, outdoor spaces, healthy food and beverage options and shared spaces.

Which all goes to say that a Fitwel-certified building is the kind of place where you want to work – a place that supports your physical, emotional and mental wellbeing.

How did it all get started? Kimmons tells a somewhat long and meandering tale involving people named Frank and Caleb and Melissa who are no longer with the company, but the short story is that the head of the GSA – the federal government’s building and acquisition agency – approached the CDC and said they wanted to create a new building code but needed to figure out how health metrics fit into the picture. Fitwel developed as a full collaboration, with the GSA and the CDC as equal partners.

Dr. Joel Kimmons of the CDC and Fitwel

Dr. Joel Kimmons of the CDC and Fitwel

“They wanted a standardized way to integrate more robust health measures but didn’t know what parts to put in,” Kimmons says. “What do we fight for? Where’s the empiricism behind it? What’s the road map here? We had strong programs at the CDC around this.

“We could barely communicate because we speak so many different languages – the builders and lawyers and public health people,” he adds. “It was a great recipe for innovation.”

Kimmons credits the early team with bringing the concept forward.

He explains how building codes evolved initially for pragmatic reasons around things such as safety, and then how materials health became important with LEED and sustainability – but health was never integrated into the system. Fitwel changes that.

Kimmons is the the kind of guy who manages to weave in references to Neitzche, Buckminster Fuller and the French existentialists without sounding the least bit showy. His parents were biologists who raised their family both overseas and at their 350-acre family homestead in Tennessee, where they relied on the kind of solar energy that was one generation away from standard methods. They farmed and have a sawmill – and his parents and some family members still occupy the place today.

“Most everything comes off the land,” says Kimmons, who goes between his home in Atlanta and the homestead.

“It’s a very closed-loop living cycle,” he says. “My parents are classic intellectual people who put science-y stuff into growing food and homesteading. It’s the ultimate innovation by necessity – always thinking about how to get things to work, that fix-it mentality.”

In fact, Kimmons came to the work he does today through a love of the land, food and science. He says the cultural aspects of food are interesting to him and governed the work he does at the CDC and for Fitwel.

“I’m at heart a nutrition scientist,” he says. “I support health amenities and policies because of the public health evidence.”

His relationship to Fitwel is agnostic. “How do you build around food?” he says. “Are we building things around an idealized image of people or are we building for the human animal?

“To build a robust society we need health-satisfied people, and the things that make people that way should be integrated into our built environment so we can ensure those outcomes,” he says.

Just as LEED drove the market and affected real estate values, Kimmons expects Fitwel to alter the market as well. “We know the benefits of occupant health are massive. Absenteeism, productivity. How much does happiness contribute to the health benefits of a building? These are becoming very important in management. Resilience among workers is critical to companies.”

Fitwel is now licensed and operated by the Center for Active Design and the City of New York. While the CDC and GSA maintain the trademark, they’re not operators of the program.

The partnership between the CDC and GSA allows subject matter experts to work together and maintain the standard, while the Center for Active Design capably advances the cause through its licensing of the program.

“It was a model for great collaboration,” Kimmons says. “People doing very different things with the same goal.”

Two big government agencies working together to power through meaningful change in public health. Imagine that.

Learn more about Fitwel.

 

Story Telling: A Journey to Better Health?

Dr. Jonathan Adler OF Olin College of Engineering studies the science of people’s stories. research supports that humans need a coherent story of who they are to support their wellbeing.

One of the most powerful aspects of the fellowship program at Stanford’s d.school is the strong sense of trust and family that develops among the cohorts. Whenever I’m asked what the best thing about the program was, I don’t hesitate. It’s the people – and the relationships formed. I developed a love and trust of my fellow fellows within weeks rather than the months and years it often takes to build a trusting bond. I’ve been thinking about that bond lately as I come to learn more about the nature of narrative identity, and the importance of story in each of our lives.

Why? One of the cornerstones of the Fellows program is the Backstory Dinner – a weekly dinner in a private setting held over the course of the first couple of months of the program in which each week one fellow shares his or her personal story. That story can be told in whatever form the fellow chooses. There are no fixed guidelines.

The stories are often powerful and emotional. It’s implicit in the exercise that each is a deliberately edited product of each fellow’s “backstory” as he or she wants to be seen by the group, but that makes it no less authentic. I remember from my fellows’ narratives a marriage video, artifacts from a challenging childhood, family photos and news covers; a wall of sports trophies displayed by proud parents; stories of creativity born of isolation. One fellow spoke with no notes or artifacts at all, like sharing around a campfire. Others presented Power Points standing, more comfortable and familiar perhaps from years of leadership. I shared excerpts of audio interviews with my aging parents and a sibling, hoping to better understand myself who I was from the perspectives of others.

Was this narrative inventory part of the powerful culture of trust and wellbeing that developed within our cohort? Without a doubt. I left the dinners feeling closer to each fellow who shared their story, a fierce advocate for the story teller – grateful and privileged by the confidence shared.

At The Better Lab at UCSF, we interview both medical professionals and patients for our projects, and the process has encouraged us to consider more deeply the importance of story in a healthcare setting. Is story more than the way we string together words to engage, instruct and entertain? Could story be fundamental to health? There’s a solid body of research that says yes.

Dr. Jonathan Adler of Olin College of Engineering

Dr. Jonathan Adler of Olin College of Engineering

One person who understands this well is Dr. Jonathan Adler, a professor of psychology at the prestigious Olin College of Engineering in Needham, Massachusetts. Olin is unique among engineering programs not just because of its size – it has just 335 students enrolled, representing 37 states and 13 countries – but because of the way the school positions itself. Heavily influenced by the work of the Stanford d.school and IDEO, the mission of Olin is to do engineering in a different way – starting and ending with people and their desire for a better world. Human-centered design is a governing approach.

Adler’s work centers on narrative identity – the science of people’s stories. He’s particularly interested in the ways personal story relates to mental health and psychological wellbeing.

“Humans tell stories,” Adler says. “This is how we distinguish ourselves from others and navigate the complexities of our lives.”

Adler says the biggest question we each face in our lives is “Who are you?” The answer to that question is the foundation of our mental health.

Research shows just how important the stories answering that question can be – and the structure of that narrative can have profound implications for health. For example, people who have incoherent stories about their lives have poor mental health. Humans, it seems, need a coherent story of who they are to support their mental wellbeing – linked to our relationships and everything we do in the world.

But our stories are fluid, changing over time as we travel the course of our lives. Traumatic events pose a narrative challenge, making it an increasingly hard task to weave a coherent story.

“Certain kinds of populations such as those with violent lives have highly fragmented stories,” Adler says. “A hard story to put together to make sense of it.”

Working in a trauma hospital such as Zuckerberg San Francisco General we encounter patients like that daily – victims of gun shot wounds, stabbings, car accidents and other tragedies that can cleave one’s sense of order in the world. Healthcare by its very nature is isolating and fragmenting, Adler says, and violence can intensify that.

Can story help? Adler believes so.

“When something happens to your body it’s there all the time and you need to grapple with the plot.”

 

“You can help these patients by helping them frame a story that makes sense,” he says. Illness is a “biographical disruption that calls people’s identities into question.

“When you develop a chronic illness your body is different than the story you’ve been telling yourself your whole life. It’s a moment when people recreate themselves. When something happens to your body it’s there all the time and you need to grapple with the plot,” Adler says.

 Studies have shown that finding positive meaning in such negative events is linked to a more complex sense of self and greater life satisfaction. Sickness or violence in our lives can be framed in a way that can strengthen our narrative identity. Life stories that emphasize redemption in the face of challenge are associated with higher wellbeing.

While those with mood problems can have many good memories, these scenes are usually marred by a negative detail. On the other hand, “generative adults”— those who score highly on tests measuring civic-mindedness, and who are likely to be “energetic and involved” — see the events of their lives as linked by themes of redemption.

In his research, Adler has noticed two themes in people’s stories that tend to correlate with better wellbeing: agency, or feeling like you are in control of your life, and communion, or feeling like you have good relationships.

Helping people frame their stories in a way that promotes a sense of control and coherence ­can aid the journey to better health.

All of this brought to mind my own experience with my d.school Fellows cohort. This was a group of highly accomplished, deeply empathetic people – “generative adults” by every measure. In retrospect, I can see that the stories they had framed for themselves included the themes of redemption and the qualities of agency and communion central to Adler’s research on positive narrative identity: the dismissive and destructive comment of an early teacher became a story of overcoming; a parent’s painful mistakes provided the opportunity for deeper meaning and wisdom in life; death and isolation led to the creation of something new that had the ability to inspire others. And, sharing these stories deepened and engendered a sense of communion that – imagined or not – seemed to enhance the wellbeing of the group.

“Our experience as a species takes place in a highly rich, complex dynamic social ecosystem,” Adler says. “Our brain needs a medium for working this out – and that medium is story telling.”

Adler says there’s a vital need in the healthcare system for the kind of integrating that story telling provides. Is there a way to bring this learning into the healthcare environment and the patients we meet? We’ll be exploring this at The Better Lab in the months ahead.

Learn more about narrative identity and the role of story telling in healthcare:

Health Story Collaborative

Living into the story: agency and coherence in a longitudinal study of narrative identity development and mental health over the course of psychotherapy, Jonathan M. Adler

Variation in Narrative Identity is Associated with Trajectories of Mental Health over Several Years, Jonathan M. Adler, et al.

The Is Your Life (and How You Tell It), The New York Times

Life’s Stories, The Atlantic

 

3 Things ...

In keeping with the interdisciplinary and creative nature of our work, another "3 Things" that recently brought us delight and/or wonder. Enjoy!

Stanford University professor and author Tina Selig.

Stanford University professor and author Tina Selig.

Check out Startup Grind’s recent podcast with Tina Selig on “Engineering a Culture of Creativity.” Tina Selig is a distinguished author and Stanford professor – but most of all she’s just crazy smart and on-point when it comes to the issue of creativity. If you want to cut through all the nebulous talk on innovation to get to the heart things, listen (and read) Selig. We consume a lot of this sort of stuff, but Selig is in a class of her own. Love, love, love this discussion! #trypod

Tina Selig on Startup Grind

OK, truth be told, we read this book a while ago – but the story lingers. The True American: Murder and Mercy in Texas by Anand Giridharadas is one of the most powerful narratives about hate, ignorance and – ultimately – redemption that we’ve read. This true story of a Bangladeshi Muslim immigrant who commits himself to forgiveness and compassion for the Texan white separatist who shot him in a vengeful rage post 911 is an urgent and eloquent story that explores the depths of isolation of those living on the margins of society – and the possibility for understanding. This is a book you’ll never forget.

And, finally, because guilt is a feeling most of us understand … The Pet’s Collective’s compilation of Guilty Dogs. You will see yourself in there somewhere– and just maybe laugh out loud.

“There’s A Fundamental Disconnect of Healthcare With Where People Really Are in their Lives.”

Former TEDMED editor Pritpal Tamber was an MD frustrated by the lack of empathy he felt innovators showed towards people’s lived realities. He’s decided to do something about that.

Pritpal S Tamber (facing) speaking with Tony Iton, Senior VP for Healthy Communities at The California Endowment.

Pritpal S Tamber (facing) speaking with Tony Iton, Senior VP for Healthy Communities at The California Endowment.

Growing up in a working-class community in England, Pritpal S Tamber was “a nerd with good exam results.” Those results led him to medical school – and from there a winding career path that took him from medical journals to tech startups to where he is today – as a healthcare visionary, co-founder and CEO of Bridging Health & Community.

In an industry with no shortage of talk around innovation and patient-centered care, Tamber comes across as the real deal – deeply thoughtful, inquisitive, critical and full of genuine concern.

He’s also the kind of guy who demands to be heard. He speaks with passion and urgency about his frustrations as a medical professional and the enormous opportunities for improvement in a field that he feels talks about innovation a lot without delivering.

But let’s go back.

Entering medical school, Tamber expected an intellectually stimulating environment that would open the doors of his mind, but instead found a system governed by textbooks that was “deeply unsatisfying.”

“You spend six years getting an education to work in a system that nobody really endorses and everyone tells you is crap,” he said. “They put you in a cage – and that always jarred me.”

In this fourth year of studies Tamber won a scholarship at the British Medical Journal where he learned the importance of peer review, editing and clinical information.

“It was the first time I felt liberation – getting underneath the assumptions of the system and the textbooks you have to learn to what is knowledge,” he said. He graduated a year later and started clinical practice, serving a couple years before he was asked to join a publishing company in 1999 called BioMed Central, one of the first of its kind in internet publishing. There he spent five years figuring out how to widen the distribution of knowledge within the field and pursuing “the utopian idea that everyone should have access to knowledge.”

“The amount of barriers is phenomenal,” he said. “It was eye opening to me how existing systems stop change – change that might offer societal good but have no commercial implications for the existing system.”

“It was eye opening to me how existing systems stop change.”

Tamber went into clinical publishing that was integrated with EMR systems and confronted the challenge of structuring knowledge in a way that aids real-time clinical decision making. He learned that the IT infrastructure required for knowledge to be useful was not there, but the system was brilliant for billing. “They’re basically billing systems with a clinical interface on top.”

The experience also led Tamber to other conclusions regarding the application of technology in healthcare. Most importantly, he discovered it’s incredibly hard to improve how a health system works with just knowledge and IT – no matter how good it is. “There’s all sorts of relationship stuff that needs to be worked on outside of anything you can do with IT.”

“When you look at innovation in health it’s all tech-driven, but trying to make any real change is all about improving relationships within that system. In a technocratic world people forget that relationships are at the core of complex systems.”

Tamber became interested in the bigger question: What stops innovation? He decided it had less to do with whether or not there was venture capital available and the mechanics, and more about the human side.

So he quit his job to become a consulting VP of medicine to startups trying to get to clinical innovation.

There he found that while he could help people figure out how the technology works, they almost always got the value proposition – the story – wrong.

Around that time Tamber was approached by TEDMED to become their physician editor. He put together their 2013 program. Working for an organization that was more interested in ideas than innovation per se proved to be an interesting intellectual exercise. “An idea doesn’t necessarily have to be realized,” he said. “There’s a different editorial process in understanding if an idea is worth sharing. The work TEDMED is doing of critically assessing ideas is really important to change – and that’s generally absent in healthcare.”

“In a technocratic world people forget that relationships are at the core of complex systems.”

So Tamber did what any MD with a background in editing and technology would – he started a blog. The purpose was to mine the disconnect between health systems and communities. His own background influences his critique.

“I was acutely aware in medical school that they didn’t have a clue about what it means to come from a working-class environment,” he said. “They offer all this advice about better food, exercise, sleep – which isn’t practical for people in these situations. There’s a fundamental disconnect of healthcare with where people really are in their lives.”

Tamber’s focus and passion became trying to understand how a health system can work with local communities in difficult social circumstances. This started him on a quest to identify practitioners around the world who were “trying to do stuff.”

“I only wanted to talk to doers because it felt to me that public health and academia are filled with ideas but very few people who are actually doing anything,” he said. “All those people talking about it for years from the perspective of social justice and health equity and – so what? How do you actually do any of what they advocate?”

The 2016 Meeting of the Creating Health Collaborative.

The 2016 Meeting of the Creating Health Collaborative.

If the community has no sense of control or purpose and no understanding of their own justice in society, Tamber challenges, why would they try to have a better life? What would be the point? “People take care of themselves because they have a sense of their future. If you don’t have a sense of your future, why would you care about health?”

It’s not without some disdain that Tamber evokes the example of people in health who talk about patients needing to go to the gym or the farmer’s market. He urges a different type of conversation. One that allowed people to define for themselves what health means. “If you allow that conversation to be authentic, you’ll find that health means things like safety, belonging, feeling connected, having access to opportunity. Diabetes usually isn’t the first thing they talk about.”

The question became: “How do you engage a community in their health when their very definition of health is different from yours and that of the health system?”

That work led to a series of interviews and meetings with select doers who he ended up calling the Creating Health Collaborative, an international group of innovators exploring health from the perspective of people and communities.

“The discourse in healthcare continues to be around virtual surgery, genotyping and sexy, tech-driven knowledge around health,” Tamber said. “People with power continue to dominate the discourse around health and people without power have no voice to say – ‘Can we just have a decent school for our kids?’”

“If you just say, ‘Hey fat person, stop being fat – it’s never going to work. But that’s my one-sentence explanation of what public health has become. It keeps kidding itself that technology is what’s going to change that. It’s still an information intervention, and they haven’t been working for four decades.”

Tamber hopes to flip that conversation with the first symposium of Bridging Health & Community – an event that will feature a diverse range of speakers from an urban planner to a political scientist to the father of social epidemiology. “There’s going to be no theory up there,” he said. “Everyone there has to illustrate practically a part of this work.”

“We continue to invest in technologies that don’t get to the communities we most need to reach and we haven’t shifted our thinking,” Tamber says. “Where is a forum for thinking in health? That’s why I created this.”

Bridging Health & Community’s Symposium, Community Agency & Health, takes place May 15-16 in Oakland, CA. To learn more and purchase tickets, go here: Community Agency and Health Symposium