This talk was presented at the 2013 Meaningful Use of Complex Medical Data

1. The Myth of Health Data
Integration Complexity
There’s nothing special about health IT data that
justifies complex, expensive, or special technology
Presented at MUCMD 2013
By Shahid N. Shah, CEO

2. This and many of my other presentations are available at
http://www.SpeakerDeck.com/shah
@ShahidNShah
shahid@shah.org
www.netspective.com
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3. NETSPECTIVE
Who is Shahid?
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20+ years of software engineering and multidiscipline complex IT implementations (Gov.,
defense, health, finance, insurance)
12+ years of healthcare IT and medical
devices experience (blog at
http://healthcareguy.com)
15+ years of technology management
experience (government, non-profit,
commercial)
10+ years as architect, engineer, and
implementation manager on various EMR
and EHR initiatives (commercial and nonprofit)
www.netspective.com
Author of Chapter 13, “You’re
the CIO of your Own Office”
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4. NETSPECTIVE
What’s this talk about?
Background
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A deluge of healthcare data is being
created as we digitize biology,
chemistry, and physics.
Data changes the questions we ask
and it can actually democratize and
improve the science of medicine, if we
let it.
While cures are the only real miracles
of medicine, data can help solve
intractable problems and lead to more
cures.
Healthcare-focused software
engineering is going to do more harm
than good (industry-neutral is better).
www.netspective.com
Key takeaways
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EHRs are not the center of the
healthcare data ecosystem.
Applications come and go, data lives
forever. He who owns, integrates, and
uses data wins in the end.
Never leave your data in the hands of
an application/system vendor.
There’s nothing special about
health IT data that justifies
complex, expensive, or special
technology.
Spend freely on multiple systems and
integration-friendly solutions.
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5. NETSPECTIVE
Is your tech infrastructure agile?
Improve speed of
response to new
patient/HCP needs
Reduce permissionoriented culture
Reduce number of
Shadow IT systems
www.netspective.com
React faster to
regulatory and
market changes
Reduce
compliance-focus
in favor of customer
focus
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6. NETSPECTIVE
NEJM believes doctors are trapped
It is a widely accepted myth that medicine requires
complex, highly specialized information-technology (IT)
systems.
This myth continues to justify soaring IT costs,
burdensome physician workloads, and stagnation in
innovation — while doctors become increasingly bound
to documentation and communication products that are
functionally decades behind those they use in their
“civilian” life.
New England Journal of Medicine “Escaping the EHR Trap - The Future of Health IT”, June 2012
www.netspective.com
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7. NETSPECTIVE
Real world requirement: Reduce heart failure readmissions
Allocating scarce resources in real-time to reduce heart
failure readmissions: a prospective, controlled study
http://qualitysafety.bmj.com/content/early/2013/07/31/bmjqs-2013-001901.full
“This study provides preliminary evidence that technology
platforms that allow for automated EMR data extraction, case
identification and risk stratification may help potentiate the effect
of known readmission reduction strategies, in particular those that
emphasize intensive and early post-discharge outpatient contact.”
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8. NETSPECTIVE
Data changes the questions we ask
Simple visual facts
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Complex visual facts
Complex computable
facts
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9. NETSPECTIVE
Implications for scientific discovery
Assuming permissions-oriented culture that prevents tinkering and “hacking” is obviated 
The old way
Identify problem
Ask questions
Collect data
Answer questions
www.netspective.com
What Dr. Jim Fackler was asking for:
Don’t try to prove what I think I already know,
tell me something I don’t know.
What Dr. Curtis Kennedy was remarking:
Medicine has patterns, there are only three
kinds: Don't know the pattern; know the
pattern, don't see it, know the pattern and
see it
Drs. Kennedy & Fackler agreed with past
research: Don’t just give me more data, put it
into the hands of the patients / parents /
caregivers
The new way
Identify data
Generate questions
Mine data
Answer questions
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10. NETSPECTIVE
Application focus is biggest mistake
Application-focused IT instead of Data-focused IT is causing business problems.
Silos of information exist across
groups (duplication, little sharing)
Clinical
Apps
Billing
Apps
Lab
Apps
Other
Apps
Healthcare Provider Systems
Patient
Apps
Partner Systems
Poor data integration across
application bases
www.netspective.com
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11. NETSPECTIVE
The Strategy: Modernize Integration
Need to get existing applications to share data through modern integration
techniques
Clinical
Apps
NCI
App
Billing
Apps
Lab
Other
Apps
Apps
NEI
App
Healthcare Provider Systems
Patient
Apps
NHLBI
App
Partner Systems
Master Data Management, Entity Resolution, and Data Integration
Improved integration by services
that can communicate between applications
www.netspective.com
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12. NETSPECTIVE
Confronting Data Integration Myths
My EHR will handle
everything I need
and push data
where required
Without semantic
mapping the
aggregated data is
not useful
www.netspective.com
I can’t possibly store
everything
I don’t have to
worry about storing
certain types of data
I only need to store
data for a period of
time
If I don’t understand
how to synthesize
data now, I’d rather
not store it
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13. NETSPECTIVE
Why health IT systems integrate poorly
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Permissions-oriented culture
prevents tinkering and “hacking”
We don't support shared identities,
single sign on (SSO), and industryneutral authentication and
authorization
We’re looking for "structured data
integration" instead of "practical app
integration" in our early project
phases
We create large monolithic data
warehouses instead of small service
oriented databases
We “push" data everywhere instead
of "pulling" it when necessary
www.netspective.com
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We assume EHRs the center of
the universe
We accept and reward vendors
that don’t care about integration
We have “Inside out” architecture,
not “Outside in”
We're too focused on heavyweight
industry-specific formats instead of
lightweight or micro formats
Data emitted is not tagged using
semantic markup, so it's not
securable or searchable by default
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14. How do we modernize integration?

15. NETSPECTIVE
Don’t assume your EHR will manage your data
The EHR can not be the center of the healthcare data ecosystem
• Most non-open-source
EHR solutions are
designed to put data in
but not get data out
• Never build your data
integration strategy with
the EHR in the center,
create it using the EHR as
a first-class citizen
Why EHRs are not (yet) disruptive
http://www.christenseninstitute.org/why-ehrs-are-not-yet-disruptive/
www.netspective.com
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16. NETSPECTIVE
Encourage clinical “tinkering” and “hacking”
It’s ok to not know the answer in advance
• Clinicians usually go
into medicine because
they’re problem solvers
• Today’s permissionsoriented culture now
prevents “playing” with
data and discovering
solutions
www.netspective.com
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17. NETSPECTIVE
Promote “Outside-in” architecture
Think about clinical and
hospital operations and
processes as a collection
of business capabilities or
services that can be
delivered across
organizations.
www.netspective.com
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18. NETSPECTIVE
Integration improves focus on the real customer
Dr. Warren
Sandberg
suggested he
needs help here
Inside-out focus
IT
Personnel
Internal
business
users and
HCPs
HCP and
Staff
Evaluators
Outside-in focus
External
HCPs
Patients
Sophisticated and
more agile focus
Unsophisticated and
less agile focus
HCPs = healthcare providers
www.netspective.com
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19. NETSPECTIVE
Implement industry-neutral ICAM
Implement shared identities, single sign on (SSO), neutral authentication and authorization
Proprietary identity is hurting us
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Most health IT systems create their own
custom identity, credentialing, and access
management (ICAM) in an opaque part of
a proprietary database.
We’re waiting for solutions from health IT
vendors but free or commercial industryneutral solutions are much better and
future proof.
www.netspective.com
Identity exchange is possible
• Follow National Strategy for Trusted Identities
in Cyberspace (NSTIC)
• Use open identity exchange protocols such as
SAML, OpenID, and Oauth
• Use open roles and permissions-management
protocols, such as XACML
• Consider open source tools such as OpenAM,
Apache Directory, OpenLDAP Shibboleth, or
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commercial vendors.
• Externalize attribute-based access control
(ABAC) and role-based access control (RBAC)
from clinical systems into enterprise systems
like Active Directory or LDAP
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20. NETSPECTIVE
App-focused integration is better than nothing
Structured data dogma gets in the way of faster decision support real solutions
Dogma is preventing integration
App-centric sharing is possible
Many think that we shouldn’t integrate
until structured data at detailed machinecomputable levels is available.
The thinking is that because mistakes can
be made with semi-structured or hard to
map data, we should rely on paper, make
users live with missing data, or just make
educated guesses instead.
Instead of waiting for HL7 or other structured
data about patients, we can use simple
techniques like HTML widgets to share
"snippets" of our apps.
• Allow applications immediate access to
portions of data they don't already manage.
• Widgets are portions of apps that can be
embedded or "mashed up" in other apps
without tight coupling.
• Blue Button has demonstrated the power of
app integration versus structured data
integration. It provides immediate benefit to
users while the data geeks figure out what
they need for analytics, computations, etc.
• Consider Direct for app-centric connectivity.
www.netspective.com
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21. NETSPECTIVE
Pushing data is more expensive than pulling it
We focus more on "pushing" versus "pulling" data than is warranted early in projects
Old way to architect:
“What data can you send me?” (push)
Better way to architect:
“What data can I publish safely?” (pull)
The "push" model, where the system that
contains the data is responsible for sending the
data to all those that are interested (or to some
central provider, such as a health information
exchange or HL7 router) shouldn’t be the only
model used for data integration.
• Implement FHIR or syndicated Atom-like feeds
(which could contain HL7 or other formats).
• Data holders should allow secure authenticated
subscriptions to their data and not worry about
direct coupling with other apps.
• Consider the Open Data Protocol (oData).
• Enable auditing of protected health information
by logging data transfers through use of syslog
and other reliable methods.
• Enable proper access control rules expressed in
standards like XACML.
• Consider Direct for connectivity if you can’t get
away from ‘push’.
www.netspective.com
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22. NETSPECTIVE
Move to service-oriented (de-identifiable) data
Don’t assume all your data has to go into a giant data warehouse
Old way to architect:
Monolithic RDBMS-based data warehouse
Better way to architect:
Service-oriented databases on RDBMS/NoSQL
The centralized clinical data warehouse (CDW)
model, where a massive multi-year project
creates a monolithic relational database that all
analytics will run off was fine when retrospective
reporting is what defined analytics. This old
architecture won’t work in modern predictive
analytics and mobile-centric requirements.
• Drive transactional ACID-based data
requirements to RDBMS and consider columnstores, document-stores, and network-stores for
other kinds of data
• Break relationships between data and store
lookup, transactional, predictive, scoring, risk
strat, trial associated, retrospective, identity,
mortality ratios, and other types of data based on
their usage criteria not developer convenience
• Use translucent encryption and auto-deidentification of data to make it more useful
without further processing
• Design for decentralized sync’ing of data (e.g.
mobile, etc.) not centralized ETL
www.netspective.com
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23. NETSPECTIVE
An example of structuring data for analysis
Preparing data is important
Hard to secure data structures
Easier to secure data structures
http://www.ibm.com/developerworks/data/library/techarticle/dm-ind-ehr/
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24. NETSPECTIVE
Industry-specific formats aren’t always necessary
Reliance on heavyweight industry-specific formats instead of lightweight micro formats is bad
HL7 and X.12 aren’t the only formats
Consider industry-neutral protocols
The general assumption is that
formats like HL7, CCD, and X.12 are
the only ways to do data integration
in healthcare but of course that’s
not quite true.
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www.netspective.com
Consider identity exchange
protocols like SAML for integration
of user profile data and even for
exchange of patient demographics
and related profile information.
Consider iCalendar/ICS publishing
and subscribing for schedule data.
Consider microformats like FOAF
and similar formats from
schema.org.
Consider semantic data formats
like RDF, RDFa, and related family.
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25. NETSPECTIVE
Tag all app data using semantic markup
When data is not tagged using semantic markup, it's not securable or shareable by default
Legacy systems trap valuable data
Semantic markup and tagging is easy
In many existing contracts, the
vendors of systems that house the
data also ‘own’ the data and it can’t
be easily liberated because the
vendors of the systems actively
prevent it from being shared or are
just too busy to liberate the data.
• One easy way to create semantically
meaningful and easier to share and
secure patient data is to have all
HTML tags be generated with
companion RDFa or HTML5 Data
Attributes using industry-neutral
schemas and microformats similar to
the ones defined at Schema.org.
• Google's recent implementation of
its Knowledge Graph is a great
example of the utility of this
semantic mapping approach.
www.netspective.com
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26. NETSPECTIVE
Produce data in search-friendly manner
Produce HTML, JavaScript and other data in a security- and integration-friendly approach
Proprietary data formats limit findability
Search engines are great integrators
• Legacy applications only present
through text or windowed
interfaces that can be “scraped”.
• Web-based applications present
HTML, JavaScript, images, and
other assets but aren’t search
engine friendly.
• Most users need access to
information trapped in existing
applications but sometimes they
don’t need must more than access
that a search engine could easily
provide.
• Assume that all pages in an
application, especial web
applications, will be “ingested” by
a securable, protectable, search
engine that can act as the first
method of integration.
www.netspective.com
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27. NETSPECTIVE
Rely first on open source, then proprietary
“Free” is not as important as open source, you should pay for software but require openness
Healthcare fears open source
Open source can save health IT
• Only the government spends more per
user on antiquated software than we do
in healthcare.
• There is a general fear that open source
means unsupported software or lower
quality solutions or unwanted security
breaches.
• Other industries save billions by using
open source.
• Commercial vendors give better pricing,
service, and support when they know
they are competing with open source.
• Open source is sometimes more secure,
higher quality, and better supported
than commercial equivalents.
• Don’t dismiss open source, consider it
the default choice and select commercial
alternatives when they are known to be
better.
www.netspective.com
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28. Visit
http://www.netspective.com
http://www.healthcareguy.com
E-mail shahid.shah@netspective.com
Follow @ShahidNShah
Call 202-713-5409
Thank You