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.


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