CIO - When you think about it, the patient empowerment movement makes plenty of sense. The average doctor visit is only seven minutes, notes Amy Cueva, CEO, co-founder and healthcare principal of experience design firm Mad*Pow, but patients are in their bodies 24 hours a day, seven days a week. In essence, she says, we are our own primary care physicians.
With 80 percent of healthcare costs related to patient lifestyle choices, it can be argued that we're not doing a very good job. As Cueva puts it, the pendulum needs to swing from treating sickness to ensuring health, to helping patients "proactively manage" sleep, stress, diet and mental health in order to foment behavior change.
It only makes sense, then, for the people designing the technology that makes health management possible to consult the people who will use that technology. At the recent Healthcare Experience Design conference, of which Cueva is the chairwoman, attendees learned 12 strategies for improving the healthcare user experience.
Understand the Problem You're Trying to Solve
Healthcare leaders often struggle to define innovation, especially when it comes to delivering value, says Ryan Armbruster, vice president of innovation competency at UnitedHealth Group. The trouble is that they start with ideas when, instead, they should start by trying to understand the healthcare problems that they need to solve. The idea, and the realization of that idea, will follow.
There are different levels of need, too, Armbruster points out. Explicit needs are met by asking, tacit needs by observing and latent needs by innovating. Latent needs are the hardest to address- they aren't necessarily things that people realize they need, but once they have them, they can't live without them. One example of a technology that addressed a latent need is the DVR.
Participatory Design: It's All About Empathy
Understanding those latent needs will require healthcare technology designers to move beyond merely solving the problems that the healthcare system has created for itself. As Armbruster says, the industry focuses primarily on physical health. Think about technology that can address the way social, environmental and community health factors affect patient health.
The way to do that, of course, is to involve patients in the design process. "They are the key stakeholders who are too often overlooked," says Richard Anderson, a consultant who focuses on the patient experience so no one endures the same unnecessary nightmare he went through in the years following a misdiagnosed parasitic infection.
Anderson cites three examples of participatory design that are working: Peer-to-peer healthcare, the quantified self movement and epatient advocacy. None has a narrow focus, and none seeks modest improvement to the status quo; all aim for "badly needed healthcare revolution."
For Samantha LeVan, a two-time cancer survivor who's now a senior user experience designer at the Mayo Clinic, this means understanding that patients will always be patients, and their stories will always follow them. "Learn about it and understand it so it won't be scary," she says.
When engaging with patients, always ask the questions, even if you already know the answers, LeVan says. You never know what you will find out. For example, in redesigning Mayo's website for medical transplants, LeVan's team learned that it's best to present information to patients and caregivers in stages, when they need it, and not all at once.
Focus on the Underserved
Dr. Ivor Horn, a pediatrician in Washington, D.C.'s largely black Anacostia neighborhood, suggests that Silicon Valley is dissociated from the population that truly needs technology-a notion that's especially troubling when the federal government, insurance companies and even the open market are starting to support these patients.
"Why aren't the innovations in healthcare focusing on solutions for minority populations?" Horn asks. The obesity rate in Anacostia is more than three times that of Georgetown, she adds, but residents of the latter neighborhood are far more likely to have heard of a FitBit.
Horn encourages the industry to find minority investors, designers and developers, not just for their experience but also their perspective. She also says minority physicians would make great chief medical officers for healthcare IT startups; many are small business owners who are used to finding customers—in this case, patients-without "venture capital backing."
Eliminate the Source of the Problem
One approach to change is idealized design. As the subtitle of the seminal text on this topic says, the idea is to dissolve tomorrow's crisis today.
Dante Murphy, global experience director for Digitas Health, explained idealized design's four phases as they pertain to banking:
Naturally, this isn't easy; referring to the Cynefin framework, Murphy notes that most of the problems worth solving are either complex or chaotic. But it's not impossible. "I know you believe me," Murphy says. "Change your organization."
Focus on What Users Need, Not What They Want
After the HITECH Act of 2009 introduced the meaningful use incentive program, with promises of stimulus checks to hospitals and healthcare providers who used electronic health record (EHR) technology, EHR vendors started scrambling for customers.
In doing so, says Jacob Reider, M.D., chief medical officer of the Office of the National Coordinator for Health IT (ONC), they gave doctors what they wanted, not what they needed. The result resembled a Vermont farm house, Reider says, with the half that Uncle Hal built looking nothing like Uncle Bill's half. Moreover, this excess customization made it difficult for new users to get started with the programs.
[Research: Big Data, EHR Driving Healthcare IT Innovation]
To that end, stage 2 of meaningful use, which goes into effect next year, requires EHR vendors to apply user-centered design principles to eight EHR certification criteria.
Remember That Millennials Are Brats
The young men and women of Generation Y and the millennial generation-roughly those born after the late 1970s-have been described as selfish brats. It's not untrue, says Sean Brennan, senior envisioner for the consultancy Continuum.
"We're brats because it's easier to create a 500-person event on Facebook than to make a doctor's appointment. We're brats because you charge so many hidden fees for that STD test when [we were] just trying to do the right thing," Brennan says-when, at the same time, "I can order a pizza from bed and watch the status bar tell me how close it is to being ready."
Continuum's research shows that millennials care about wellness, Brennan says, to the point that diet, fitness and (increasingly alternative) treatment regimens become part of their identity. Healthcare, on the other hand, is deemed an expensive, political system valuable only in emergencies, a government program that costs as much as a luxury service.
Healthcare organizations can improve the way millennials view their industry by fostering collaborative relationships that treat patients like partners and give them tools to track their progress toward achieving a health goal, Brennan says. Such apps should resemble Fandango, Uber and STD Triage, which lets patients take photos of rashes and have them anonymously reviewed by doctors. This last example shows that millennials have embraced openness and shed concerns about privacy, so anything that makes a healthcare network feel even more like a maze of secrecy will simply fall flat.
Don't Confuse Web Literacy and Health Literacy
Opposite millennials on the technology spectrum are the various segments of the population classified as "Web illiterate." They may be older, less educated and more likely to suffer from a chronic health condition, but that doesn't mean they're unwilling to use the Web to access health information, says Sandy Hilfiker, principal and director of user-centered design at CommunicateHealth.
To engage these types of users, go to the source, Hilfiker says. Use proxy measures to screen participants, narrowing your search to, say, those who don't regularly look for information online, and then go to them at senior centers or community centers. As you test your apps, revise them and repeat the process, limit the number of tasks that participants will do, lest they become overwhelmed, and don't forget that cash incentives can't hurt, she says.
Don't Forget That Typography Matters
The best patient education resources in the world mean nothing if no one bothers to read them. That's why typography matters, says Molly McLeod, creative director of CommunicateHealth. McLeod offers several tips make information easier for patients to read:
- Sans serif fonts are better for the Web. Type size should be at least 16, with an easy-to-use widget for making text bigger near at hand.
- Lines of text shouldn't exceed 75 characters (roughly 15 words). Line height should be at least 140 percent so there's white space between each line.
- Headlines and subheads should get progressively smaller. Paragraphs should be short, with spaces between them. Bulleted lists are your friends.
Target the Ready and the Willing
Change isn't always an exercise in behavioral engineering; it's often unplanned. In addition, while healthcare focuses on the "numbers" related to change-blood pressure, weight and blood glucose, to name three-indirect effects such as improved confidence and better mood can't be quantified.
In other words, it's hard to convince patients to change their behavior. The hardest to motivate, when pushed, will likely fail, while the easiest to motivate don't need a push. That's why Dr. David Sobel, medical director of patient education and health promotion at Kaiser Permanente, suggests that providers focus on those in the "middle of the curve."
To "prescribe" success, he says, a patient's care plan needs to be personal, specific, easy, rapid and pleasurable. If patients need to exercise, for example, ask them what activities they enjoy and build an action plan around that. Take the time to discover solutions by asking patients what they think might work best for them. (In one case, Sobel says, such questioning helped a patient decide t put her "take my medicine" notes on her detergent, since she did laundry every day. It worked.) Finally, don't forget to celebrate successes-positive reinforcement never hurts.
Learn From Video Games
The gamification concept is more than just scoring points and earning badges and plaudits, Cueva points out; it also involves understanding the psychological triggers that keep people engaged. This means focusing on motivation that's intrinsic (what individual patients care about) and not extrinsic (what a health insurer or healthcare delivery organization thinks they care about).
Jane McGonigal, a game designer and author who developed SuperBetter to help counteract the symptoms of her own post-concussion syndrome, says empowered patients benefit from positive reappraisal, a perception of social support and a willingness to engage with their stressors, among other factors.
A game such as SuperBetter, which helps users set goals as they recover from injury or illness or focus on living a healthier life, can turn stress into "post-traumatic growth" and act as a "springboard to unleash our best qualities," McGonigal says. When this happens, she adds, people avoid a life that's filled with the top five regrets of the dying.
Support Measurement-Based Medicine
The evidence-based medicine concept suggests that information from many sources-from EHR systems to medical devices and, yes, games-can help physicians make care decisions. But Jamie Heywood, cofounder and chairman of the research and peer care site Patients Like Me, says that's a misnomer, since there's really no evidence that the decisions will work.
It's better, then, to focus on measurement-based medicine, he says. This tracks the severity and impact of a condition to support patients (who make life choices), physicians (who make care choices) and researchers (who determine what works). "You have to solve all three together," Heywood says. "That's when you really learn something."
When measurement becomes part of the care process, physicians can predict how a patient will do, decrease the time it takes to know what works for that patient and, critically, know what the next patient will need in order to receive better care, Heywood says. The key is that the output of all this measurement is clear, relevant, doesn't make a patient anxious and will help him or her change.
Bring a Sword
Today Holliday is an artist and a patient advocate whose Walking Gallery gives a voice to patients harmed by the medical errors and inefficiencies that happen when patient data is not available. It's no small matter-as Heywood points out, medical errors are the sixth leading cause of death in the United States.
To explain why she spoke at Healthcare Experience Design, Holliday quoted Matthew 10:34: "I did not come to bring peace, but a sword."
Put another way: You need to make people uncomfortable in order to change healthcare the way it needs to be changed. As the United States struggles with healthcare reform and IT implementation, the next 15 years will be very uncomfortable, she says-but without the sword, there can be no peace.
Read more about health care in CIO's Health care Drilldown.
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