The Lybbaverse  

Health Leads asks patients the tough questions, to serve vulnerable families

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In 1996, Rebecca Onie co-founded Health Leads, as a sophomore at Harvard, with Dr. Barry Zuckerman at Boston Medical Center. The nonprofit pairs powerful interdisciplinary teams with experienced physician-advocates to meet the needs of vulnerable families.

Operating in Baltimore, Boston, Chicago, New York, Providence, and Washington, D.C., the organization poses potential solutions to help eliminate the root causes of illness. Last year alone, they enlisted a corps of nearly 1,000 college volunteers and assisted 8,800 low-income patients and their families in obtaining food, heat, job training, and other basic resources they need to stay healthy.

Onie is also a World Economic Forum Young Global Leader, U.S. Ashoka Fellow, and member of the Young Presidents’ Organization and the Mayo Clinic Center for Innovation External Advisory Council. Among her many awards and honors are a MacArthur Genius Fellowship and John F. Kennedy New Frontier Award. O! Magazine placed her on its Power List of 20 women who are “changing the world for the better”, and Forbes Magazine named her "one of the top 30 social entrepreneurs in the world”.

In this interview with Jesse Dylan, she shares the stories of families with little access to resources and what's being done to help.

Mayo Clinic’s design mind: true innovation makes existing ideas viable

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Mayo Clinic’s Center for Innovation (CFI) is offering a sea change in the way healthcare is experienced and delivered. The Center draws on a myriad of research techniques to understand patient needs and find design solutions to meet those needs. 

Maggie Breslin, CFI senior designer and researcher, believes strongly that innovation is less about new ideas and more about how we can make existing ideas viable. Along with a multidisciplinary collaborative of physicians, administrators, designers, and technologists, she works to manifest creative solutions so that people and patients can actually experience them.

A patient-centered approach allows the team to concentrate on human needs and to ensure healthcare is affordable, accessible, and valuable for every patient. Researchers can even speak with and observe patients and their families in an in-house lab to gauge feedback on potential solutions.

Breslin speaks with Jesse Dylan, founder of Lybba, about CFI and her efforts in making healthcare innovation a reality.

“Does the Earth have willful amnesia?”: Anna Schuleit’s archeology of mental institutions

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Jesse Dylan recently introduced several of us at Lybba to the early work of visual artist Anna Schuleit, creator of the site-specific installations BLOOM and Habeas Corpus, both set on public sites soon to be modern ruins. They investigate the social history and architectural decay of disappearing mental institutions.

Addressing the persistent absence of flowers in psychiatric hospital settings, BLOOM featured 28,000 flowers and 5,600 square feet of live sod placed throughout four floors of the historic Massachusetts Mental Health Center in Boston (November 14-17, 2003). The old public announcement system was used to play recorded sounds of the building from the days leading up to its shut-down.

The sound installation Habeas Corpus punctuated the closing of Northampton State Hospital (noon, November 18, 2000); the hallways and rooms of the abandoned structure were transformed into the "insides of an instrument". The public was invited in to witness a single performance of J.S. Bach’s “Magnificat”, a choral piece in 12 movements.

We're honored to feature this interview with the artist.

How did you find yourself working with mental hospitals that were closing, and why were they closing? Could you speak to how the two projects are based on your previous research?

AS: When I was in high school I discovered Northampton State Hospital through a friend: it had recently closed, after a decade-long phase-out, and lay in ruin atop a vast hilltop, waiting for demolition. I remember extracting its history from my friend and her friends, from neighbors and former employees, from state officials and local activists, trying to find out, piece by piece, what had happened to this institution, why it had opened and why it had closed, where all its people had come from and where they had gone. It was my first act of self-directed fieldwork, a kind of postmodern archeology.

An urban theorist Norman Klein gives tours of sites where buildings no longer stand. This moment you describe sounds like that space before disappearance, which many "pass by" before the absence prompts a pause.

AS: Your mention of Norman Klein's tours reminds me of a question that I've had in my mind for years: Does the Earth have willful amnesia? Is she inherently indifferent toward sites of trauma? Does memory diminish, grow over? To an attentive visitor, sites of past trauma carry the imprints of their past. On battlegrounds we walk especially carefully because we expect, half-consciously, to stumble over forgotten artifacts. In his book Landscape and Memory, Simon Schama made a reference to the buttons of soldiers’ coats on the ground. Or even, and more gruesomely, bones. Most often we find nothing, but the expectation alone, if we know something about the place, is great enough to sensitize our minds to the uneven terrain and emotional weather of the past.

As late visitors we crave specific visual clues to experience a more specific memory. At the old ruins of Pompeii, viewers are drawn to the casts of dying bodies, exhibited in a small museum on-site, because those casts are the most stark and dramatic visual reminders of the trauma and death that took place there. Many tourists proceed directly and hungrily to those casts before seeing any other aspect of the ruins. While Pompeii is the site of a natural catastrophe, and battlegrounds are sites of man-made injury, murder, and death, psychiatric institutions are something slightly different: they are sites of chronic illness and slow confinement, their functions spanned decades. The artifacts of psychiatric architecture are less object-bound, more atmospheric. Their architecture is disheartening, has a raw, imperious physicality. In these old buildings we see the functions of a flawed health-care system laid bare in its architectural details and structural dimensions, its own trenches.

Could you tell me more about your postmodern archeology?

AS: I came to my work as a pedestrian, with the wish to somehow capture the enormous psychiatric institution through small drawings from across the overgrown lawn. Crouching in the weeds I moved my artist’s workplace into the immediate proximity of the building. I was caught by security, and chased away, again and again. It turned out that I had to keep moving, to appear like a jogger or dog walker, and all was fine. For years I petitioned to get access to the inside of the building, and when I finally got it, I started recording my walks through the various units and floors on paper, using them as a hand-drawn record of my interaction with the site. Based on my interest in map-reading and mapmaking, they became a form of remembered orientation in space. I collected paint samples in each room I passed through, creating a library of greens and blues and other colors used in institutions.

In my early meetings with state officials, back in the late 1990s, I was told that I would not get the permissions necessary for my projects, since I was an "artist". I thought of my drawn walks and gathered color samples and realized that I might change the terminology in my favor: I started using "document" instead of "explore" to justify my request for entry. I invoked the authority of the profession of archeologists as a cover for my work. But state officials trust archeologists and historians, while they're deeply suspicious of artists and journalists, the latter being ungovernable and prone to make unpleasant discoveries. Archeology is a science that hints at a treasure. Archeologists are paid to do their work when treasures are assumed. Of course, in this case, the institutions, there is no treasure at all, just specificity. To regard this specificity as a treasure became my goal.

What's it like to go from the initial composition and preparation of each piece and/or/then fall-into-the-abyss nature of the sudden interactive/inhabitation of the spaces you create?

AS: The initial conception of the work is solitary, then it goes out and gets shared in meetings where it grows (or atrophies), and then it's a long time, sometimes years, before it gets realized, becoming real and solitary again in the end. All of my large site-specific works, including the most recent one at UMass Amherst, Just a Rumor, were too large to be tested in advance, so that I didn't know how they would look and feel in the space until they were in place. Which is a rather raw process with great potential for surprises . . . not for the faint of heart. But if the work has buoyancy in that process, if it has its own voice in the end, then the transition from mind-state to actual state is stirring and humbling, each time. In Habeas Corpus, that transition was when we had finished installing the sound system and began the 'tuning' of the building, wing by wing. In BLOOM it was when the flowers arrived on the trucks, needing to be watered and placed. In Landlines it was when we opened the telephone lines to the trees, making an entire forest resound with different ringtones in the dark. In Just a Rumor, it was when I climbed down from the boom lift to look for the face that appeared in the water, from across the pond.

Is Northampton completely demolished now, or was it preserved after your project?

AS: Northampton is demolished now, yes. After Habeas Corpus took place in 2000, there was some renewed wishing to preserve the building, a group of citizens formed, and I was asked to join. But during the four years of preparing the project I had always made one identical promise to the people I asked for support from, be it financial or logistical or political: that I would never come back for another favor. That if they helped me with this project now, this one time, I would never ever be back with additional requests or pleas. The response was usually a sigh of relief: "Ok, great. If you don't ever show up at my desk again, then I'll help you this one time!" And I've honored my promise. I didn't join the preservation efforts, nor did I believe that the building should be preserved at that point, so late in the game. The main building, a historic "Kirkbride" structure, had been shut down in the 1980s, as the gradual phasing out was underway. When I saw it and started planning Habeas Corpus, it was already a complete ruin: no heat for many seasons, nature had begun to reclaim it. The water damage was tremendous.To first stabilize and then preserve the building would have cost many millions of dollars, money that was direly needed for services. So I didn't (and still don't) support the rehabilitation of these buildings unless it happens right away, in conjunction with their closure.

Of your new work, you write: "The paintings I’m interested in have nothing to do with the world of ideas. I want them to remain rich in stuff, in shapes, in textures, but doggedly story-less." Could you tell me about this? Do you feel these paintings are a departure from earlier work?

AS: The paintings have always been there for me like that. I need them on a daily basis, as a constant, untethered from language and narrative, because then I can be, too. Paintings require the viewer to step into an engagement with them, voluntarily. Paintings, unlike movies, dance, music, storytelling . . . aren't time-based or sequential, which is a gift. I have been painting longer than I have done site-specific installations. For the large projects I have to borrow resources that I don't have, while the paintings manage to sustain themselves, and me, through long stretches. They are my truest form of thinking out loud.

Did the recordings of memories penned by visitors at BLOOM and Habeas Corpus reflect the distinct nature of each exhibition, or were they similar?

AS: The memories of institutions often resemble each other, seem to be hewn from the same archetypal tree somehow: they are stories of serious illness, at the most basic level, but filled with brilliant, individual anecdotes—mixing the general pain and isolation, shared by so many, with the specific, and deeply personal, workings of survival. These stories are similar to each other by way of setting, the locale of institutionalization, the built environment that is often interchangeable, the century-long backdrop to psychiatry. In that way, these stories are like war stories, forever changing and affecting the lives of those who were there.

We end with one of those memories, selected by Anna Schuleit:

"My mother told me, 36 years ago, ‘Hang on. They'll find a cure.’ I was suffering alone until I came to MMHC. And today... oh so grateful... beyond any words, so grateful. Lives and sufferings have been redeemed here, and today we celebrate and honor, all of us, in this place, for better or for worse. Today, we flourish. The list of what we cannot do grows shorter and shorter. We become comfortable in a world of three dimensions; we gladly surrender the fourth, fifth, and sixth."

Rock Health: “This isn’t your parents’ health IT movement”

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Jessie Dylan, Lybba founder, sits down with Halle Tecco, CEO and founder of Rock Health, to find out more about her non-profit accelerator for digital health startups.

Tecco has successfully brought technology and healthcare together with creative minds to push the boundaries of healthcare delivery and service. CNN has named Tecco one of the “12 entrepreneurs reinventing healthcare” and Inc. Magazine called her “one of 15 women to watch in tech.”

Rock Health catalyzes interactive health innovation by connecting entrepreneurs with the organization’s partner hospitals, investors, and designers during their five-month accelerator program. They seek out creative concepts with the potential for impactful change in health technology, then help transform those ideas into viable businesses. Rock Health graduated 13 teams last November and is now working with their second class of entrepreneurs.

“We are the laboratory”: placing better care and faster cures in the patient’s hands

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Members of the Lybba team emphasize the importance of communities of care, in a film created by our partner Wondros.

I just returned from the Sage Bionetworks Commons Congress, where Lybba was asked to define, with other attendees, its commitment to open data networks. The way I see it, Lybba designs and promotes initiatives that improve collaboration between patients and their care providers to expose common cause, promote best care, and enable collective discovery. We focus on better care, on the way to faster cures.

Traditional healthcare nonprofits secure donations by promising to invest in laboratory science in pursuit of a cure, and yet for the most part cures remain as elusive as ever. When such organizations originated 50 years ago, this approach made a certain amount of sense: if you wanted to donate money to fight disease, investing in laboratory science seemed logical because scientists were the ones with the laboratories.

Gradually, healthcare science is liberating itself from the laboratory. We are the laboratory, and we are becoming the scientists, too. With the advent of new healthcare information and communications technologies, patients can now make and share observations that can benefit their own health and at the same time, improve the wellbeing of all. And what is true for patients is just as true for doctors: rather than waiting a dozen years for insights to wend their way through the scientific community, clinicians can conduct their own population studies and tailored experiments easily, cheaply, and safely. But only if they're designed with the particular needs of people in mind, and how they fit into the larger whole.

But what organization has the patient’s needs at heart? Who is positioned to collaborate with doctors, researchers, and policymakers to guide the redesign of the healthcare system in ways that make the best care most broadly available? Lybba's mission is to enlist patients and their caregivers in improving their own care and to connect them with the clinicians, communities, and researchers that can help them make meaningful use of the observations and insights they make. Lybba designs and integrates the information and technology tools that best satisfy the needs of those closest to the needs of the sick.