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Sep 11, 2017
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Designing in the Void

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To fix our health care system we must bridge extraordinary gaps. With optimism and conviction, it’s possible.

America’s health care system is neither healthy, caring, nor a system,” America’s most famous broadcaster, Walter Cronkite, once said. That was more than 20 years ago, but not much has changed.

Our health care system remains endlessly complicated — so much so that patients’ inability to effectively navigate it is costing them their time, money, and even their health.

When I first started studying health care through the lens of design, a colleague showed me the diagram below to help me wrap my head around all the moving parts of the system. The diagram does a decent job of illustrating the lay of the land, but its nucleus is misleading. It implies that the health care system is centered on and at the service of the patient, when, to put it bluntly — it isn’t.

A less attractive but more accurate diagram was shown to me some years later by Sean Duffy, CEO of Omada Health. Here, directly above, we get a real sense of how bloated and highly regulated the path is between the patient and the product. Patient centered? Try again. This diagram shows us how clearly displaced the patient is from the center of the system, and if we take Cronkite’s words at face value, this is really no system at all. Not only are the stakeholders represented in the diagram not working in concert, but their interests are often competing and contradictory.

Here’s the mind-boggling thing: The second diagram, with all its tangles and complications, has been the accepted standard for health care for several decades. This is especially frustrating because if there’s one thing all health care stakeholders share an opinion about, it’s that the model represented in this second diagram is not sustainable for anyone — not for patients or for manufacturers, payers, or care providers.

“At times, in medicine, you feel you are inside a colossal and impossibly complex machine,” said the surgeon-turned-author Atul Gawande. “The notion that human caring, the effort to do better for people, might make a difference can seem hopelessly naïve.”

Gawande is right that human caring alone won’t fix the problem. We’ll need to design a new approach, using a patient-centered methodology that takes a rigorous look at what’s working and what’s not. Reimagining our system will need to center on three giant gaps in the health care system, gaps that present very real barriers to a patient-centered system.

Access gap

For too many Americans, the health care system remains a forced destination — somewhere they end up because of crisis, not because of regular and preemptive care. These Americans are usually uninsured (there’s more than 28 million of them) and generally want to avoid at all costs the idea of being sick. On the other hand, you have well-insured families in the upper-middle class paying additional concierge fees to ensure access to the best treatments delivered at the most respected institutions. We see how enormous this gap in access is, which has a lot to do with time, money, geographic location, and resource supply.

Readiness gap

This gap involves the emotional barriers and fears associated with undertaking new and more effective treatments. Note here that I did not identify a technology gap — in many ways, the technological potential to streamline the health care system already exists. We have DNA testing to identify issues in a developing fetus. We have advanced immunotherapies to treat cancer. And we have brain implants that allow the blind to see and the deaf to hear. But the real question is: Are we ready to implement and standardize these treatments? Consider the misunderstandings and backlash around one of the most basic scientific advances of our day — the vaccine.

Insight gap

Now consider the gap between the data believed by the health care system to be significant to patients and the data that’s actually legible, available, and actionable for those patients. Health institutions have troves of data and information about disease prevention, but most of that information hasn’t been translated into actionable insights that trigger a behavior change or an “a-ha” moment in patients. There is too big a gap between the data-rich information available to institutions and the actionable, real-life information that pushes people to change their behaviors.

Access, readiness, insight. These are the most pronounced gaps in our health care system and the ones that will need to be bridged as part of any comprehensive restructuring of our old way of doing things. We accomplish this through an approach called “designing in the void,” which takes a systems-view when creating new solutions. It marries humanism and science to make consumer-led health care a reality, not just an inevitability that we’re patiently waiting to one day materialize.

We’ll need to design a new approach, using a patient-centered methodology that takes a rigorous look at what’s working and what’s not.

How do we use this approach to bridge the access gap? We first need to better understand the human behavior and daily habits that influence how we interact with the health care system, and how to integrate that system to accommodate our daily habits rather than the other way around.

How do we use it to bridge the readiness gap? We need to study the latent human needs, fears, and motivations that add friction to health care adoption. Technological solutions are critical, but they are useless if we are too scared, distrustful, or uninterested in adopting them.

Finally how do we design in the void to address the insight gap? We need to stop prioritizing the raw collection of data, and start to focus on framing that data into actionable insights that compel people to act and change their habits for the better.

Nowhere is the need to design in the void more apparent than in the world of mental health. Here is a field where demand for reliable and cost-effective treatments far outweighs the supply, and the additional challenge of cultural stigmas prevent people from seeking out help even when they have the means to. The term mental health also carries with it a lot of baggage: Is this a disease I’m suffering from, or is this something I’m responsible for feeling? Many Americans don’t know what signs to look for or who to ask if they have a problem. In short, the mental health system has huge barriers to entry, even when controlling for financial resources.

One of the best-in-class examples of a mental health services provider that has designed in the void is the Dahlia Center in Denver, Colorado. The center provides mental health services in a disadvantaged area, but is marketed as a wellness center in order help reduce the stigma associated with seeking mental health services. Dahlia attracts people by offering dental care, cooking classes, a farmer’s market, gardening center, basketball court, and internal and external playgrounds for kids with childcare while parents go to their doctor visits. Once a person starts using the center, Dahlia staff may suggest mental health services when they see a need for it.

An approach like Dahlia’s nails the three big gaps that plague our system. It bridges access, with its focus on being in the pathway of disadvantaged populations. It bridges readiness, by providing human-centered treatments that marry innovation with familiarity and community support. And it bridges insight, by providing people with information in the context of their everyday lives — new skills, habits, and next steps instead of abstract health outcomes. A community-based, brick-and-mortar solution such as Dahlia can be effective, but is difficult to scale.

How can we use technology to bring human-centered mental health solutions at scale?

The proliferation of app- and online-based solutions in mental health has led to some skepticism — that without an evidence base, these new solutions, although promising in their ability to scale, lack scientific credibility. We can address this skepticism with smart collaborations between the designers, technologists, and researchers that can lead to scalable solutions with proven clinical effectiveness.

An academic research team at UC San Francisco (UCSF) partnered with IDEO to develop a digital tool for patients with schizophrenia. More than 30 million people worldwide suffer from schizophrenia, but only half of them receive psychiatric treatment. And although medication can treat some of the traditional symptoms, it does not always address less recognized problems such as social anxiety or lack of motivation.

Our unlikely collaboration brought together a mix of inputs and methods, including behavioral science, neuroscience, qualitative input, quantitative metrics, and an iterative design process. The result is a platform called PRIME, which helps increase motivation and engagement in patients, and reinforces rewarding experiences. Data from clinical trials showed a 96 percent retention rate for patients (compared to a more than 30 percent dropout rate for most studies) with significant gains reported in quality of life, social functioning, and motivation.

In our quest to design in the void, and to accelerate our collective path to achieving a truly human-centered health care system, we’ve had the opportunity to meet with so many individuals who have fallen into the many gaps in our current health care system. Our research travels have recently taken us to Wyoming, which has the second-highest suicide rate by firearm in the U.S. Secondary research inspired us learn more about men struggling with mental health, especially in rural, conservative areas that might provide an extreme context for access to mental health services. In Wyoming, we met with a man named Jeff, who traveled two hours to meet with our team and tell us his story. Jeff is a true cowboy, in life and at work, but he shared with us his story of struggling with mental health and the stigma that was even more pronounced in a community that promotes self-reliance. He had no access to care. He was overcome with shame attached to asking for help let alone the symptoms themselves. He didn’t understand what he was going through, or what he could do to feel better. Jeff almost disappeared into the void last year.

The opportunity in front of us is to look upon the void with optimism and conviction. It’s not humanism or science, physical or digital, data or design that will fill the void of our health care but forces combined that will move us towards an honestly healthy and caring system.

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