The Lybbaverse / design  

Designing for the visually impaired with the potential to transform quality of life

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Lybba recently designed the Science of AMD website on behalf of the Angiogenesis Foundation. It's aim is to increase international public and patient awareness of Wet AMD—the leading cause of vision loss for those over 65; the role of angiogenesis, or new blood vessel growth, in vision loss; and the importance of antiangiogenic treatments for saving vision and maintaining a good quality of life for individuals affected by Wet AMD worldwide.

The online resource provides accurate, easy-to-understand, and useful information about the evidence supporting antiangiogenic therapy for Wet AMD. Everyone affected can be empowered with knowledge of treatments, practical steps they can take to protect their vision, importance of early detection, and impact on quality of life, plus a summary of symptoms, trials, and resources.

An Amsler Grid, horizontal and vertical lines used to monitor a person's central visual field, is included to allow visitors of the site to test to see if they may exhibit early symptoms of AMD, in addition to slideshow tutorials and video testimonials. The language used is accessible and approachable, targeting and reassuring an audience of older adults and senior citizens affected by AMD, and their advocates, with the encouragement to get tested and offering the support they need.

Design elements to aid the visually impaired included a large typeface and use of highly contrasting colors, such as blue and yellow, and allowing for enough white space on the page for ease of readability. There is the ability to toggle back and forth to adjust the type size from the default setting to cater to someone who has more of a sight disability, as well as an audio component for those more visually impaired. The sliding table of contents along the left sidebar and simple navigation to underscore where they are at all times, enhances wayfinding. Unique to the look, designed by Molly Cooper, is the array of color combinations, utilizing 16 different color and type size recombinant variations throughout the entire site.

Lybba employs an ecologic interaction design approach. All of our projects begin with research-based personas that serve as lenses to understand community needs and to see clear solutions. For each organization, we study the ecosystems where a product will be experienced and create a communications platform to define its essence.

Over three months, Lybba worked with the Foundation to create the identity for the Science of AMD, site design, and content strategy with a creative team composed of a director, visual designer, interaction designer, content strategist, and editor. Since its launch, the client has successfully used the site to raise awareness around treatment and the need to continue to ensure patient activation and potentially reverse the effects of AMD. 

Flipping the pyramid: looking to Cuba as a model for future care

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It's easy for two people to look at the same information - such as this chart (above) about health costs - and perceive totally different things. What I see is an out-of-control Medical Industrial Complex that's heading, Icarus-like, for collapse. What many designers see is a sea of opportunity - and boy do they want a piece of that action.

They are not alone. Many city-regions see the 'health space' as an opportunity for growth. In the Netherlands, for example, Groningen's Healthy Ageing Campus is billed as a "research and entrepreneurship zone" that will focus on healthcare, food & health, medical technology, and pharma.

In Eindhoven, too, a project called Brainport Health Innovation (BHI) will focus on "well-being for the elderly and chronically ill…while generating economic opportunities for the region".

The pattern is Europe-wide: an organization called Healthclusternet is encouraging all the EU's 27 member nations to develop "regional health systems and health innovation markets".

The promise of economic opportunity persuaded its sponsors to pay for last week's World Design Forum in Eindhoven on the theme of "Creating a Caring Society".

Eindhoven, home of Philips and the lightbulb, was recently voted "smartest region in the world" for its prowess as an innovator of high-value, technology-based products. A meeting to explore how this smartness might be applied to the global care market must have seemed a promising idea.

The only problem? Our discussion raised the possibility that a complex, doctor-intensive, technology-based approach may not be an affordable, or even necessary, ingredient of caring society.

My contrarian advice was that we need to grow care systems based on five per cent of the costs per person that we have now. This sounds like a fantasy, but is not. In Cuba, for example, where food, petrol and oil all have been scarce for of 50 years as a consequence of economic blockades, its citizens "achieve the same level of health for only 5% of the health care expenditure of Americans."

The use of Cuba as a benchmark is a hard sell at health industry events. Imagine my surprise in Eindhoven, then, when a Cuban-style strategy was advocated by someone with real financial clout. Roger van Boxtel, CEO of a big Dutch insurance company, Menzis, used this [admittedly hideous] upside-down pyramid to describe how his company plans to re-direct spending for its two million insured clients.

 

The tiny triangle on top of the right-hand pyramid - marked "soon" - represents pretty much the entirety of resources for today's Medical Industrial Complex. When I asked the head of a huge hospital, on the same panel, what he made of this startling transformation in resource allocation, his rueful reply was that "if he says so, that's the way things will go."

 

 

Menzis does not propose to do away with hospitals altogether. But it does intend to reduce costs radically by focusing common procedures at a small number of preferred suppliers. It will send all patients for hip replacement, for example, to one clinic, Maartsenkliniek, which already performs 700 hip operations a year.

Logically, it is hard to see why Menzis' inversion of the Follow-The-Money principle should stop at Dutch borders. An international patient visiting India can save 70 to 80 per cent on the average cost of similar procedure back home. Hip replacement surgery at the top rated hospital in India costs US$5,000 - including the cost of an FDA approved implant or prosthesis.

In the social space, a key principle of Cuba's system is that health and wellbeing are not something ‘delivered’, like a pizza, by distant suppliers. In Cuba's - and Menzis' - version of a caring society, value is created by mutually supportive relationships between people in a real-world context, away from big medical institutions. This is no small shift of emphasis; the 'delivery' metaphor is pervasive in the developed world's systems.

That said, Cuban-style 5% health is not about a u-turn back to a pre-scientific age. It's about focusing resources and creativity on the 95% of care that happens outside the medical system already, today. It’s about re-imagining the 'health space' as a social and ecological context which, like a garden, needs to be cared for - collaboratively.

One of the main reasons industrial world health systems are unfit for purpose is that they under-value socially-created knowledge and socially-delivered support. This is why open source health, and learning how to create and grow care co-operatives and other forms of care collaboration is so important. 

Read more at "Doors of Perception."

“It’s too ugly for me to die here”: Michael Graves redesigns the hospital space

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“The Michael Graves Design™ collection for Target represents the shared belief that people instinctively appreciate great design and that it should be affordable and accessible to all.

One afternoon, award-winning architect and Princeton University professor Michael Graves came down with a sinus cold he couldn’t shake. It became virulent, affecting the brain and spinal cord, and by the next morning he was paralyzed from chest down. While receiving critical care and spending months in a rehabilitation center, his mission to redesign hospitals began.

In rehab, supposedly built for patients in wheelchairs, he was unable to accomplish basic tasks like reaching the faucet and electrical outlets. Frustrated, he insisted that his doctor get into a wheelchair and roll through the room to experience his plight. It is from this perspective of a patient, not a renowned architect, that Graves designs for healthcare.

Hospitals are often most interested in spending money in public spaces that the magazines will photograph, such as atriums, which he calls “27-story monsters” and lobbies with comfy chairs. Graves comments, “If you’re spending 40 million dollars, build a model room.”

He describes how patient mobility is limited: "Add railings to the bed, and call buttons, TV remotes, and tissues are all but out of reach, not to mention an NBA maneuver is required to get trash in a bin." In developing nations, he found even more atrocities, such as trays with bacteria growing underneath them. 

Graves designs to enhance movement, lessen the risk of infection, and even resolve the problem of the toothpaste thrown into the spit-cup. "It was a matter of engineering not architecture,” he acknowledges, "so we made R2D2," a tray table with a curvilinear, easy-to-move-and-clean design. There’s a place for everything, including an attached wastebasket. Graves also made a stand-assist chair, for patients to easily get up. One arm sticks out in front of face of chair; with a "nose over toes" approach, equilibrium is facilitated.

Of his work, he jokes: “Modernists will hate the rounded edges," yet Graves might be considered a modernist himself, an architect designing down to the last functional detail. He is often credited as broadening the role of the architect in society and raising public interest in good design as essential to the quality of everyday life.

Graves' work is receiving increased attention of late as the postmodern architecture he advocated enjoys a resurgence and vendors like Target continue to enlist high-end designers like him to enhance utilitarian products for the masses. Now it's time to call attention to his democratization of design for patients, too. 

When asked at TEDMED 2011 recently why the experts (namely architects and designers, and even doctors) weren’t getting it right for so long, he replies matter-of-factly, “They haven’t lived in a wheelchair.” 

C3N helps patients take health into their own hands, responsibly

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On Inspire.com, a woman discusses her quest to remedy her own symptoms of psoriasis. “In my search for a livable solution to my very severe psoriasis,” she says, “I have begun searching for ‘cause and effect’ instead of the ever more popular ‘symptom treatment’ that I have personally participated in with disastrous results for the past 45 years.” Her self-discovered solution includes a combination of using slippery elm, limiting fats and gluten, taking probiotics, and soaking in water. As she says, “Something is working.”

This is an example of a self-imposed “N of 1 experiment”. Such experiments can be highly effective, but they can also be misguided. Without a methodical approach, it’s difficult to know exactly what is actually working. Without the supervision of a doctor, some can be dangerous. Nevertheless, patients continue to perform N of 1 experiments – sometimes they don’t even realize they’re doing it – and the traditional medical community is often slow to step in.    

C3N, based out of Cincinnati Children’s Hospital Medical Center, shifts that paradigm by lending the needed support and creating an N of 1 prototype program, designed to assist pediatric patients with IBD. Patients and clinicians work together to design experiments, “to develop data collection tools, protocols and reports that physicians and patients can use to provide highly specific, personalized answers to questions that will help decide which combination of treatments and lifestyle modifications work best for the patient.” By providing a controlled environment for patients to experiment, C3N supports patient activation and encourages self-directed care, while allowing doctors to improve the quality of the clinical experience in and out of the doctor’s office.

Lybba is helping C3N take the project online. The C3N platform will provide a network where patients interact with each other and their clinician care team to track N of 1 experiments and monitor symptoms. They’ll determine what works and what doesn’t. The system also provides a support mechanism for parents and a quick easy way for researchers and clinicians to get the data they need to make quality improvement decisions in relation to the care of their patients.

Consider Orleans, a 13-year-old girl with ulcerative colitis, whose father recently discovered that his daughter seems to get worse whenever they run out of yogurt for a few days. He’s heard of probiotics as an alternative treatment for some symptoms of IBD and wonders if there is a correlation. He desperately wants to help Orleans feel better, but he doesn’t want to play around with his daughter’s health. There isn’t much time in a 15-minute visit to fully investigate the possibilities with Orleans’ doctor, but the C3N platform provides a mechanism with the N of 1 prototype where her family can work with her physician to create an experiment and track the results day to day.



Lybba’s design team has defined Orleans and the above scenario as part of a persona modeling methodology for the C3N platform, based on months of research and interviews with actual pediatric IBD patients, their parents, and clinicians. The goal is for patients like Orleans and her family to have a safe and effective place to conduct N of 1 experiments, while clinicians remain constantly apprised of their status, via an automatic, streamlined, and simple process.

Features of the network include basic health surveys and journal entries, which patients can choose to share with their friends and family, or just with their doctor. Doctors will be able to retrieve the vital data about how all of their patients are doing as a test group and how each is feeling on a daily basis over time. Patients will also have access to the progress of their fellow patients, so they can benefit from approaches that are working for others. In sum, the C3N platform brings together patients, parents, clinicians, and researchers to collaborate with one another, and the vision is that C3N will be applied to even more disease states, contributing to quality improvement of healthcare and individual health over time.

On Steve, from a child who watched him cross the intersection

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Hearing the news was hard. Thoughts of my first computer, my family, and my community are deeply interwoven into the fabric that Apple spun, and much of my life would be different without the work done by them. But the news of Steve Job's death is bigger than that. He was no computer engineer, but his thoughts pervaded ours. He created an environment that enabled us to understand computing and opened our eyes to community of scientists, developers, and artists who altered the status quo. 

We know not to mourn his death but take pride in his influence on us. Someday they'll say, “Hey! You know, that guy . . . in the '70s . . . he brought real computers to the masses. If it weren’t for him they’d still be exclusive to those Wall Street types.” We should thankful for those “tinkerers”, those “geeks", those “anaraks”, those “hobbyists”, those “neckbeards” that Steve enabled. Steve didn’t care about making things “enterprise” friendly, and beyond the garage hobbyists he wanted to enable all of us

Yes, not everything that came out of Apple was as awesome as he said (and, as many of you know, I would be the first to say so), but damn it, you know he pushed his people to make it that awesome. He felt he had a duty to create computing for those who didn’t necessarily have the bulk of the wealth (read: the 99%); he was a voice for us. He wanted to make sure that we could actually comprehend it, integrate it into our lives, and use it to do the things that make life better.

He wanted to empower everyday people to make a better place for themselves.

If you use an iPhone or an iPad or really any personal computing device… for a minute just forget bird-throwing apps, forget taking a mirror picture, forget the vanity for just a minute, and use that device to contact someone. Contact someone, in person, you feel can change the world; encourage them to work harder at it, offer to help, use your phone or tablet to set up a meeting place and listen to their goals. I think that’s how we should celebrate his life.

So my final thoughts: I’m glad he got to see Apple successful again; I’m glad he left seeing Apple as healthy as ever. Computing is still in its infancy, but he compelled us to embrace it and bring it in to our homes. We should actively continue his effort to make it better and to enable more people around the world to do the same.

I’m taking this a lot harder than I thought I would. When I was I kid he was one of my heroes. When I watched him blaze through that stop sign near Apple HQ in his AMG Mercedes I knew I wasn’t mistaken.