Rehab Reverb

Part 1 of a Series: Data's Reach, Resonance and Reality

My first dance with data occurred when I became an out-patient at The Institute for Rehabilitation Medicine in New York City.  As a patient, I was indexed, coded, abstracted and condensed; therapeutically synced along the spectrum of my third and fourth birthdays.  As a memory, it is my earliest; cognitively weighted to a rich network of specialists dedicated to addressing my unique needs as an upper extremity amputee.

It has been an Anthropology of Self ever since rounds and rounds of white-coated specialists first began their task of assessing and evaluating me; clipboards cradled, devotedly capturing the clinical moment, carefully notating the patient: doctor dynamic.  In code, each of them would render their impressions; their clinical conclusions.

Data collection was a norm, as it is today, among Rehabilitation practitioners.  Data, both unique and commonplace to those who begin and sustain the work of Rehabilitation, or its cousin Physical Therapy, provides bare-bones facts and patient-specific-perspective where progress is the currency of recovery, healing and wellness.

The Institute is now part of New York University’s Langone Medical Center; and is referred by its branded shorthand as: Rusk.  Compared to its original structure, it is a behemoth mid-town presence with plans underway to expand further into select Manhattan neighborhoods.  As a footprint, in a city on task to provide multi-specialty 21st century healthcare, it has swallowed Rusk.  As a result, my initial synthesis of self and out-patient experience relies almost entirely upon memory not place.  

To the extent such urban change contributes to forgetting, my out-patient-narrative is emboldened by my highly impactful participation in a summer employment program administered at Rusk.   When funding for the program was threatened by Reagan-era, Washington politics, a self-selected group of us embarked upon a plan to seek private and corporate dollars to save it.

We first sought the support of Howard Rusk, M.D. not just because we knew him (as did the world), as the father of Rehabilitation Medicine but because as readers of his Autobiography A World to Care For we knew he was a man of great scope and intention. 



Persuaded, Dr. Rusk’s endorsement of our goals earned us access to audiences both prominent and powerful.  In turn, we lobbied with honesty and wit relying entirely on narratives extracted from the essential characteristics of our ‘unique’ disabilities and our varied work assignments throughout New York City. 

Our strategy was naively simple: Personalize, personalize, personalize.   As a technique, it was a borrowed truism from the oft-quoted:  “Write what you know.”   As a fund-raising tactic, it fell short.  We mistakenly believed anecdotes alone were sufficient to win influential allies and secure funding.  It was a lesson in the importance of pairing compelling first-person accounts with data.

Our present-day hyper-connected mobile lives have re-made data.  It has become a commodity stitched together by non-uniform notions of ‘privacy’ and algorithms sourced for profit.   The rush is on to build “Intelligent Systems” which promise consumer convenience, location-specific navigation and opportunities linked to our “likes” or comments on social networking services (applications) like Facebook.

There are other, seemingly benign efforts underway among cause-specific data-developers whose hopes are to defend or revive democratic ideals; or bring greater “transparency” to governments and to the decisions of elected officials.  Similarly, cities throughout the world aspire to make use of data to enable better spending decisions with budgets drawn from revenues collected to provide improvements and services to its citizenry.

One of the most sweeping approaches to data has originated in Armonk, NY world headquarters of IBM.  Recognized for its competitive advantage, decision-making potential and value, IBM’s data-defined goals embrace an array of sectors; made especially clear by its upcoming Big Data and Analytics conference Insight 2014.

Among Big Data's many marketplace opportunities is Healthcare.  Due to the broad social and commercial transformation enabled by mobile devices, there is intense pressure to reduce costs and improve health outcomes.  Advances in big data and analytics capabilities are driving innovation and smarter care strategies.  At Insight 2014, healthcare organizations are expected to share how they are "extracting rich insights from internal and external data sources of various types to capture the "voice" of the individual to engage more effectively and improve performance and outcomes."

Under the umbrella of IBM's Smarter Care Initiative, Vice President of Industry Solutions Karen Parrish and Otsuka America's Vice President of Government Affairs, John Bardi presented virtually as joint partners last month addressing: Smarter Care for Mental Health: Improving Outcomes for Individuals With Serious Mental Illness.

The IBM/Otsuka partnership aims to tackle Public Mental Health delivery systems by addressing its social, lifestyle and clinical components.  Noting the huge Mental Health "Federal and State spend," Bardi described the current situation as a spiral of crisis." "By 2020, Behavioral Health will be the biggest disability."

Assertions like Bardi's immediately bring to mind my 2012-2013 involvement with the Los Angeles Veterans Health Collaborative, part of USCs Center for Innovation and Research on Veterans and Military Families.  As a member of the Behavioral Health Working Group, many facts (data) came to the fore during our discussions.  The urgency of improving delivery systems is especially clear when presented by these sobering facts:

One in three veterans of the Iraq and Afghanistan wars is diagnosed with post-traumatic stress symptoms, and veterans kill themselves at a rate of one every 80 minutes. Returning service members face everything from marital problems to traumatic brain injury to substance abuse. 

In order for analytics and cognitive computing to serve as a solution, there must be a focus on outcomes.   The affected “communities of care” must rally and pay close attention to the “consumer voice,” says Parrish.  “Among the Mental Health ecosystem, there is substantial overlap with no memory.”  We need to uncover “highly repeatable solutions” within clinical systems.


The importance placed on “consumer voice” humanizes Big Data and gives more legitimacy to the analytics associated with Smarter Care efforts.  Going forward, Electronic Health Records (EHR) is fundamental to any notion of “voice,”  ‘privacy’ or efficiency.  When fully functional and exchangeable, the benefits of EHRs offer far more than a paper record can.

Appraising the value of " voice" along the timeline of data, I recall the era of paper; when I (along with my dedicated peers) made an effort to rally Rusk’s communities of care.  None of us were ‘disabled’ by any objective uniform standard.  We agreed on outcomes but our identities were bound by subjective and sociological differences.   Employment among us however, was a highly repeatable solution; especially in contrast to prejudicial hiring practices of the period which unfortunately continue today.

Our pursuit of “voice” is more than an invitation to listen.  It is a rallying cry to hear.

Architectures Ancient and New

Borrowing from the 1986 song The Boy In The Bubble written by Paul Simon and Forere Mothoeloa, I declare:

These are the days of wearables and wonders.  This is my smart-phone call.  The way its camera follows me in slo-mo; staccato signals of constant information, a loose affiliation of millionaires and billionaires and baby, don’t cry, don’t cry.



These seeming fragments are quite real.  So real, for those who have a stake in them; the corporations, mobile App developers, thought leaders, entrepreneurs and least of all, those global consumers for whom the Economics of wearables depends, fragmentation is perceived to be the central hurdle, most especially in the realm of Data and Digital Health.
 
In Barcelona, from February 24-27, 2014 The Mobile World Congress will convene and its attendees will take on many of the perceived opportunities and issues presented by the worldwide adoption and use of mobile-based products.  The event’s organizers assert that Mobile is a catalyst of change and innovation. Mobile is creating the next connected device that transforms communication. Advancing the next payment system that alters commerce. Launching the next must-have app that changes how we interact.”

Among these catalysts, changes, innovations and transformations are concepts like connected living, data analytics, developing markets, intelligent networks, identity and privacy, network economics and optimization. Each of them will be a focus of discussion, debate and dissection in Barcelona.  But most compelling is an afternoon session scheduled on the last day of The Mobile World Congress: “Redefining Reality with Screens, Storage & Wearables.”

While compelling, the session is also provocative and presumptuous.  A sojourn to Barcelona is in fact, not a prerequisite for asking these fundamental questions:  Whose reality will be redefined?  What values will be present in such re-engineering? How will our relationship with our augmented bodies redefine our expectations of Self?


Not long after smart-phones were introduced, I sought to redefine my own reality by first recognizing the implicit design limits of smart-phones.  Their basic physicality; viewed as a function of my biology, was an instance of the classic [and much discussed] tension of form versus function.

Since my first prosthetic fitting at the pioneering Rusk Institute of Rehabilitation Medicine in New York City, I have spent most of my life maneuvering objects, tools and tangible space with a prosthetic arm.  Those daily negotiations are, to some degree, self-imposed.  It is my choice to augment my body with a device as ancient as the Egyptians.

Some decline prostheses for the very reasons some consumers decline to purchase smart-phones. Neither is essential to one’s life.  Cost is another factor.  There is lack of demand by some would-be consumers owing to perceptions of value, need and usefulness.   Also, the requisite learning unique to the mechanics and use of both, respectively, hinder their purchase and adoption.

Viewed categorically, prosthetics and smart-phones occupy a place among the disparate; cached among the fragmentation of data and among the Internet of things.   Their convergence, as I first became conscious of it, was an opportunity to imagine a re-purposing; to lay claim to an embodiment of  a 21st Century Self.   Critical however, was first acknowledging the limitations of prosthetics and smart-phones when viewed as separate entities.



To associate smart-phones with ‘limitations’ runs counter to their current and ever-growing predicted global demand, profit-schemas, cultural and societal prevalence and marketing.   
Such is the primary and unconscious native prejudice of a two-handed marketplace!

The most expedient explanation of smart-phone ‘limitations’ relies on the verbiage used during their initial consumer introduction: Handhelds.  As a matter of design, holding the device of one’s choosing in one’s hand and manipulating its interface is the universal starting place.  Having another hand to anchor or stabilize the hand-held / smart-phone; while optional, is the overwhelming default among users.



Their limits then, as viewed from a one-handed perspective, are quite obvious.  Layered upon this ‘scarcity’ of the body,  are our Mobile lives; often requiring us to hold our mobile devices in one hand and perform a whole range of tasks with the presumed ‘other’ hand.

Re-purposing technology is sometimes pursued collaboratively.  In my case, it was a requirement of breathing life into my vision of creating a hands-free smart-phone —a wearable computer relevant not just as a solution to the problem of scarcity but a design transferable to many different Mobile contexts and users.

A complete re-making of my prosthetic platform was prefaced by a design-based conversation with Dr. Stephan Manucharian, Clinical Director at Othopedic Arts in New York City.  Customization is never negotiated in the fabrication of prosthetics or orthotics.  It is the de facto standard. 

While a one-size-fits-all approach is never a part of the manufacturing process [as it is in many other manufacturing environments] there are certain mechanistic and design features which are viewed as ‘standard.’  The socket, for example [pictured] is usually rounded, not flattened.



All designs, as part of their chronology from idea to their practical application, their usability, require testing.   Some refer to this as “proof of concept.”  Nearly three years have elapsed since I began my wearable trajectory; since taking on a relationship with what is both ancient and new.



Taking my discoveries to scale will require additional collaborations; perhaps most importantly, where self-powered mobile devices are concerned.  Indeed, powering our mobile-enhanced lives is fundamental to our re-engineering.  I view it as an especially exciting aspect of my 21st Century embodiment.

“Wearable technology.  It’s an exploding product category in desperate need of a category-defining product,” began Jon Phillips in his PC World piece titled: Wearable Tech at CES 2014: Prepare your body parts for an onslaught of options.

Wearables require a category-defining product?   My re-defined reality is brimming with categorical evidence.  Its embodiment is already here.  And much of the data favors Digital Health.

I welcome these days of wearables and wonders.

This is my smart-phone call.