The future of your identity

09/29/16 Thomas J. Petry - AITP NoVa 1
The Future of Your Identity
Thomas (Pete) Petry
AITP NOVA
Thursday, May 10th
, 2006
Ft. Myers Officer’s Club
TJPetry@Yahoo.com
Cell: 202-367-5971

The Future of your Identity
A
Healthcare
Informatics
Perspective

Overview
 The Human Thirst for Knowledge
 Informatics
– Healthcare Informatics (HCI) and Personal Informatics (PI)
– How HCI and other related fields impact PI
– Key HCI Stakeholders
 Healthcare
– Administrative Law
– HIPAA
– US Healthcare Market
 Point of no return
– Technological and Regulatory Trends
– Convergence and Vortex of the Future
– The Future of your Identity

Proverbs Chapter 25 Verse 2
“It is the glory of God to hide a
thing ...”
“… but it is the glory of
Kings to seek out a matter …”

Humans Like Information
We Seek it …
We Collect it …
We Classify it …
We Manipulate it …
We Store it ..
We Retrieve it … and
We Disseminate it …

The Thirst of Knowledge
 “Knowledge is Power”
– Sir Francis Bacon
– Sir Isaac Newton
– Sir Winston Churchill
 “Knowledge is Power; Information liberating;
Education the premise of progress in every society
and in every family”
– Kofi Atta Annan, Seventh Secretary-General of the United
Nations (1997-2007) co-recipient of the Nobel Peace Prize
in 2001

Overview
 Informatics
 Healthcare
– HIPAA

What is Informatics?
 Short Answer:
– The Science of Information

What is Informatics?
 Short Answer:
– The Science of Information
 More Definitive:
– The coupling of IT with applied information
sciences in a given field
– A bridge that connects people, information
and technology to a given field of study

People
Information Technology
Informatics

History of Informatics
 Coined in the 1960’s by the French
 Came from Applied Information Science
 Popularized by the Soviets (Informatika)
 US continued to use Information Science
 During late 70’s several fields of IT flirted with
the term
 Medical/Healthcare Informatics caught hold

Need for Informatics
– Vast amounts of data are being generated in virtually all
fields of science and is increasing exponentially …
– Rapid advances in computer hardware and software allows
us to capture more and more data …
– Rapid proliferation of broadband networks and high speed
data communication protocols …
– Trend is for information storage to continue become more
and more pervasive …
 Hence: The need to understand and warehouse this
data and the emergence of Informatics particularly in
Medicine, Biology and other related sciences …

Informatics Studies
 The structure, behavior and interactions of natural and artificial
systems that:
– store
– process, and
– communicate information
 Healthcare Informatics (HCI) is the study of the cognitive,
information processing, and communication tasks of human
medical practice and the systems we employ use in the
diagnosis, treatment, research, regulation, education, funding,
payment, or reimbursement for services designed to provide
desired healthcare outcomes …

Communication
Data Processes
Informatics/Technology

Merging of HCI Sub Disciplines
 Medical Informatics is expanding into HCI
– Bio Informatics (Biometrics)
– Structural Informatics
– Clinical and Clinical Research Informatics
– Pathology Informatics
– Imaging Informatics
– Public Health Informatics
– Pharmacy Informatics
– Health Informatics Law
 Shift from Medical to Total Healthcare Solutions
 Shift to recognize citizens as agents of their own care

Clinical
Imaging Consumer
Health
Healthcare Informatics

Human Biological Informatics
 Your own body can be thought of as a
massive database storing data in basic
storage units called DNA …
 DNA contains the genetic instructions used in
the development and functioning of your body
 It provides long-term storage of information
– genes, chromosomes, genomes …
 Provides instructions to regulate the use of
that information:
– DNA Sequences/Bases …

Human Biological Informatics
 Human bodies contain approximately 3 billion
base pairs of DNA …
 Arranged nicely into 46 chromosomes …
 In the same way that the body stores and
uses information … Informatics allows us to
understand these complex processes and to
apply these concepts to other related fields

Non-Medical Informatics
 Chemical Informatics …
 Geographic Informatics …
 Mechanical Informatics …
 Economic Informatics …
 Identity Informatics …
 Social Informatics …
 Personal Informatics …

Personal Identity Informatics
 Expanded far beyond your SSN
 PI now concerned with:
– Financial Services Identity (Credit and Portfolio)
– Health Identity (Pre-Existing Conditions)
– Criminal Identity (Background Checks)
– Employment Histories
– Education, Licensing, and Accreditation
– Address Information
– Vital Statistics and other public records
– Business and Commercial Identity
– Use of Biometrics
– Data Breach Notification and Response
– Security and Privacy Concerns
– Identity Management

Ethical
Social Legal
Personal Identity Informatics

Concepts of Informatics
 The specialization of information management to the processing
of data, information and knowledge in a named field of study …
– Introduces relational concepts and theory
– Enriches the understanding of both the data and the field of study
– Deals with storage, retrieval, relational design and optimal use of
information
– Aids in problem solving and decision making
– Covers the entire spectrum of information in the related field
including all basic sciences
– Studies the social, ethical and human factors of a given field
– Ties business process, data, and communications
– Can be thought of as the next generation of Library Sciences

The Glory of Kings
Informatics is logical end point to Human Thinking …
The more information we collect …
The more we classify that information …
The more we classify …
The better we define our body of knowledge …
The more defined our concepts …
The more we understand other data …
The better we define Concepts of Informatics …
The more information we collect …

Key HCI Stakeholders
 National Institute of Standards and
Technology (NIST)
 Health Level 7 (HL7)
 National Committee on Vital and Health
Statistics (NCVHS)
 Centers for Disease Control and Prevention
(CDC)
 Healthcare Information and Management
Systems Society (HIMSS)

 National Committee for Quality Assurance
(NCQA)
 Joint Commission on Accreditation of Health
Care Organizations (JCAHCO)
 American National Standards Institute (ANSI)
 World Health Organization (WHO)
 The American Health Information
Management Association (AHIMA)

 American Health Information Community
(AHIC)
 American Society for Testing and Materials
 Association for Electronic Health Care
Transactions (AFEHCT)
 National Center for Health Statistics
 Center for Healthcare Information
Management (CHIM)

 College of Healthcare Information
Management Executives (CHIME)
 Healthcare Information and Management
Systems Society (HIMSS)
 Health Informatics Standards Board (HISB)
 Agency for Healthcare Research and Quality
(AHRQ)
 Massachusetts Health Data Consortium
(MHDC)

 National Association of Health Data
Organizations (NAHDO)
 National Institutes of Health (NIH)
 National Human Genome Research Institute
(NHGRI)
 National Institute of Biomedical Imaging and
Bioengineering (NIBIB)
 International Medical Informatics Association
(IMIA)

Overview
 Informatics
 Healthcare
– HIPAA

Current US Regulatory Environment
 Constitutional Law (Amendments)
– Over 10,000 introduced since 1789
– Only 27 ratified (last ratification in 1992 Limiting Congressional Pay Raises)
– Bill of rights was actually the last 10 of 12 proposed (ratified between 1789 and 1791)
– 27th
amendment was actually the 2nd
of the first 12 introduced
 Legislative Law (USC)
– Acts of Congress cannot violate the Constitution
– Hundreds of Thousands introduced into House and/or Senate
– Close to 600 actually got ratified
 Requires both Congressional Ratification then President “signs into law”
 Unless VETO by the President or
 Reconsideration by Congress after VETO
 Must pass Judicial Scrutiny
 Administrative Law (CFR)
– New regulations issued daily
– Published in a Multi-Volume set known as the code of federal regulations
– Divided into 50 distinct categories known as titles
– Several Thousands have been codified
– Containing hundreds upon thousands of titles, chapters, parts, and sub-parts

Administrative Law
 Results from rulemaking, adjudication, or
enforcement of a specific regulatory agenda by an
agency of the US Government
 Scope of Authority comes from both Executive Order
and Congressional Legislation
 Decision-making bodies (tribunals, boards,
commissions, agencies, etc.)
 Published in the CFR (Code of Federal Regulations)
 Expanded Greatly in 20th
century world wide – Not just
in the United States

Well Known Administrative Laws
 Interstate Commerce Act – 1887
 Communications Act – 1934
 Old Age Pension Act – 1935
 Federal Food, Drug and Cosmetic Act – 1938
 National Aeronautics and Space Act – 1958
 Social Security Act – 1965

Areas of Administrative Law
 International Trade
 Banking/Commerce
 Manufacturing
 Environment
 Taxation
 Broadcasting
 Immigration
 Transport
 Labor
 Agriculture
 Homeland Security
 Elections
 Employee Benefits
 Housing
 Highways
 Education
 Telecommunications
 Public Health

Scope of Administrative Laws
 Must be consistent with legislative intent
 Must be consistent with statutory authority
 Cannot violate Constitutional authority
 Cannot violate Legislative authority
 Generally cannot explicitly deny authority
 Cannot overlap a duplicated authority
 Must be based on factual findings
 Must serve the public interest

Federal Rulemaking Process
Q: How does Administrative Law work
under the US Constitution?

Q: How does Administrative Law work
under the US Constitution?
Answer:
– Enacted by Congress by the
Administrative Procedures Act of 1946
– Follows the Federal Rulemaking Process

 Ensures the public is informed
 Allows the public to comment
 Allows public access to the proposed rules
 Ensures agencies analyzes public comments
 Ensure agencies create permanent record of their
analysis and the rulemaking process
 Ensures agency rules can be reviewed by judicial
branch to ensure correct process was followed
 Has seven (7) distinct steps or phases

1. Legislation
 The US Congress passes a law and
assigns an agency of the government to
promulgate additional regulations
– Example: Clean Water Act
– Delegation: EPA

2. Advance Notice of Proposed Rulemaking
 This is an optional step
 AKA: Notice of Intent (NOI)
 Involves publishing the agencies initial
analysis of the subject matter
 Asks for early public input on key issues
 All data and communications made
available to the public

3. Notice of Proposed Rulemaking (NPRM)
 Publication of the actual proposed
regulatory language (Federal Register)
 Full discussion of the justification and
analysis behind the rule
 Includes agency response to any prior
public comment on advanced notice

4. Public Comment
 Public Comment Period Begins
 Agency required to respond to each issue
raised in the comments
 Comment periods may last for 30 to 180 days
or more
 Similar to Private Rulemaking – Internet,
Java, American National Standards, ISO, etc.

5. Final Rule
 Usually the proposed rule becomes the final
rule with some minor modifications
 Agency publishes full response to issues
raised by public comments and an updated
analysis and justification for the rule including
an analysis of any new data submitted by
public (Code of Federal Regulations)
 In some cases agencies may publish a
second draft proposed rule

6. Judicial Review
 In some cases interested parties file law
suits (this step is therefore situational)
 Courts review whether regulation
exceeds authority
 In USA Administrative Law carries the
same authority as Legislative Law or
Constitutional Law if not in conflict

7. Effective Date / Compliance Date
 Rule does not immediately become effective
 Allows regulated parties to “come into
compliance”
 Might allow for up to several years to comply
 Compliance Dates can be extended
 Compliance Dates can be selectively
enforced
– Complaint Based
– Good Faith Effort

Overview
 Informatics
 Healthcare
– HIPAA – Legislative or Regulatory?

HIPAA - Legislation
 The Health Insurance Portability and
Accountability Act of 1996 (Kennedy-
Kassebaum Act)
– Title I – Portability
– Title II – Accountability – Delegated wide
authority to the Department of Health and
Human Services

HIPAA Title II - Regulation
 Title II included a provision known as Administrative
Simplification (or A/S)
 Delegated Authority to the Department of Health and
Human Services to draft rules aimed at increasing the
“efficiency of the US Healthcare system” by creating
standards for the use and dissemination of healthcare
information
 Delegated Authority to HHS:
– HSS already controls Medicaid, Medicare and State
Children Health Insurance Programs
– HSS now regulates portions of the entire healthcare
industry

HHS Promulgated Five Rules
 The Privacy Rule
 The Security Rule
 The Enforcement Rule
– Mostly Legal Implications
 The Transaction and Code Set Rule
 The Unique Identifiers Rule
– Mostly Technological Implications
Note: All five of them had a direct impact on your
Healthcare Identity

Privacy – Security – Enforcement
 Defined who has access to your data
 Defined how to protect that access
 Set civil penalties for violations and
established procedures for investigations
 Defined two distinct terms related to your
Healthcare Identity:
– Individually Identifiable Health Information (IIHI)
– Protected Health Information (PHI)

Individually Identifiable Health Information
 Member or Subscriber Names
 All geographic subdivisions smaller than a state
 Dates of Birth, Admission, Discharge, Death
 Telephone Numbers
 Fax Numbers
 Social Security Numbers
 Member Identification Numbers
 Email Addresses, Web URLs, IP Protocols
 Any other information that could be used alone or in
combination with other information to identify a
person who is the subject of the information

Protected Health Information
 PHI is any information containing IIHI
weather:
– Oral, written, electronic, visual, pictorial, physical,
or any other form;
– That relates to an individuals past, present or
future;
 Physical or mental health
 Status, condition, treatment, service, products
purchased, or provision of care
 Which reveals the identity of the individual

Disclosure of PHI
 Covered Entities can disclose PHI within chain of
trust:
– Business Associate/Business Associate Agreement
– Minimum Scope of Disclosure
– Notice of Disclosure
– Authorization of Disclosure
 Exceptions made:
– Law Enforcement
– Public Health Programs
– National Security
– Other

Transaction and Code Set Rule
 Standard Transactions
– Enrollment and Maintenance
– Eligibility Request/Response
– Referrals and Authorizations
– Claims
– Claim Status Request and Response
– Remittance Advice and Premium Payments
 Code Sets to be used in transactions
– Internal and External Code Sets
– Medical and Non-Medical Code Sets
Important Note: This made the format of your Health Information
Record a matter of Public Knowledge

Health Care Data Element Dictionary
 Contains over 1,000 data elements just to support nine required
transactions necessary to support the lifecycle of a healthcare
claim from enrollment of a beneficiary to the remittance for
services
 Each of these data elements reference external code sets that
in turn call upon hundreds upon thousands of external code
descriptions
 Future transactions anticipated for the future:
– Report of first injury
– Claims Attachments
– Electronic Medical Records and Personal Health Records
– Clinical Decision Support Systems
– Regional and National Health Information Exchanges (HIE)
– Non implemented enumeration systems

Unique Identifiers Rule
 National Health Plan ID (N Plan ID)
– Handled by National Plan and Provider Enumeration System
(NPPES)
 National Provider ID (NPI – May 23, 2007 Compliance Date)
– Handled by National Plan and Provider Enumeration System
(NPPES)
 National Employer ID (EIN)
– Used Existing EIN assigned by SSA
 National Patient ID …
– Most Controversial of all rules
– Congress provisioned additional congressional approval
– NOI Put on hold/additional hearing postponed indefinitely
– Privacy and Security not the only Concerns
– Consider the cost of enumerating 300 million Americans

Did HIPAA Solve the Problem?
 An attempt to control 20th
century medicine with 19th
century
paperwork
 An attempt to regulate the Healthcare Industry into adopting
standards it was unwilling or unable to do by consensus
– Tried to solve a business problem through regulation
– Healthcare spending still way out of control
 An attempt to solve an administrative nightmare through the use
of additional paperwork
– Short Term increased rather than decreased the cost of Healthcare
 HIPAA isn’t a collection of compliance dates – it’s a process
– Notice of Proposed Rulemaking (NPRM) continues
– HHS still has widely delegated powers

Overview
 Informatics
 Healthcare
– HIPAA

Current US Healthcare Market
 Spending 15% of the GDP increasing to over 20%
– 3 times more costly than the United Kingdom
– Highest Pharmaceutical costs in the world
– Highest Overall Healthcare costs in the entire world
 17% of the US Population still has no Insurance
 Emergency Medical Treatment and Active Labor Act (EMTALA)
ensures they get treatment anyway
 Plagued with
– Healthcare disparities
– Equal access to quality healthcare
– Preventable Adverse Drug Events
– Plagued with Preventable Medical Error

Current US Healthcare Market
 Most scientifically and technologically advanced healthcare
system in the world, But:
– Lacks the elements Of a free market
– Lacks the elements of transparent pricing
– Lacks incentives necessary to build industry consensus
– Highly Regulated on supply side
– Healthcare Systems are still highly complex, fragmented and use
multiple IT systems and vendors incorporating different standards
– Results in healthcare inefficiencies, waste, adverse drug reactions
and medical errors
 AND: Only country in the developed world where you loose
your health insurance at the same time you loose your ability to
purchase more

The US Healthcare Evolution
 Self Pay
– 1ST
Party Payment (Patient at risk)
– Early 1900s
 Indemnity
– 3rd
Party Payment (Insurance Co at risk)
– Employer based group plans
– 1920’s through 1990’s
 Shared Risk (but still employer based)
– Capitation – 2nd
Party Payment (Provider at risk)
– Integrated Networks (Insurance and Provider)
– Consumer Driven Health Plans (all share risk)
– 2000 and beyond

Employer Based Healthcare
America's Insured
46.6 Million People in the US without Healthcare
Insurance for Part of 2005
59% Through Employer
9% Purchase Directly
27.3% Government
Programs

US Healthcare Costs
 Growing at a rate of 2.5 times faster than our economy
 Rose from 7% to 15% of GDP in last 35 years, rapidly approaching 20%
 Huge price-shifting strategies to accommodate
– Uninsured patients
– Litigation
– Research
 Yet still we continue to fund research and trials
– $111 billion in 2005
– $61 billion for pharmaceuticals
 Why?
– Consistent ROI
– $2.5 to $38.5 ROI for every extra $1 spent on healthcare
– Value of Life (VOL) between $50,000 and $100,000
– We might save money if we didn’t but more people would die from disease
or accidents and less babies would survive …

Overview
 Informatics
 Healthcare
– HIPAA

Point of No Return
 Can’t go back to Free Market Healthcare
 Can’t put our Personal Identity back in the box
– We were told SSN would never be used for anything else
– Asking for SSN in merchant transactions has proliferated our SSN into
countless databases
– Healthcare informatics and other trends are likely to proliferate our
Healthcare Identity into thousands upon thousands of more
 Can’t turn back the regulatory clock
– Regulatory Capture
– Deregulation Ineffective
 Can’t switch off and slow down technology
– Roadrunner Culture
– World of Instant Gratification
– Do you really want to go back to a world without advanced medical care?
 So where are we going?

Health Technology Reform
 National Health Information Infrastructure (NHII)
– Distributed National Health Information Database
– Regional Health Information Organizations (RHIO)
– Proliferation of Health Information Exchanges (HIE)
– Expanded use of EMR, EHR, and PHR
 Clinical Improvements
– Expanded use of Clinical Decision Support Systems
(CDSS)
– Expanded use of Computerized Physician Order Entry
(CPOE)
– Proliferation of Retail Healthcare Clinics
– Globalization of Standard Clinical Vocabulary

Health Technology Reform
 Interoperability between Medical Devices (HL7)
 National Patient Identification System
 Expanded use of RFID Technology in Healthcare
 Multiple Quality Initiatives for Improvements to patient
safety
 Wider Use of electronic Prescribing (e-Prescribing)
– Improvements to pharmaceutical and patient safety
– Wider availability of patient histories including medication
usage
– Elimination waste fraud and abuse (physician shopping)

Convergent Globalization
 Convergence of technology (research, connectivity, integration),
inter-dependence, economic (pricing, products, wages, interest
rates, profits), geopolitical (social, cultural, political) towards a
developed countries norms
– Every day life is being standardized throughout the world
– Life expectancy almost tripled in developing countries since WWII
– Child Labor drops from 24% in 1960 to 10% in 2000
 In healthcare ICD directly impacts global standardization:
– Most widely used statistical classification system in the world
– Web-based approach to revise ICD-11 planned for 2008-2014
– ICD-9-CM 1977 (USA) – ICD-10-CM/PCS 1983-1992 (Many other
countries)
 Read the book “The World is Flat” 2006 by Thomas L. Friedman
– Advanced technologies developed
– Engineers in New Delhi, programmers in Poland, customers is Boise

Convergent Legislation and Regulations
 World Intellectual Property organization Copyright
Treaty (WIPO) 1996
 Digital Millennium Copyright Act (DMCA) 2000
 Patriot Act of 2001
 Identity Theft and Assumption Deterrence Act of 2003
 Real ID Act of 2005 – DHS promulgating rules
 Payment Card Industry Data Security Standard (PCI
DSS)

Potential Future Legislation
 Cyber-security Enhancement and Consumer
Data Protection Act, HR 836
 The Internet SAFETY Act, HR 837
 The Spy Act, HR 964
 HR 948 unlawful to sell or buy Social Security
numbers
 Prevention of Fraudulent Access to Phone
Records Act, HR 936

ID Theft Still Real and Continuing
 Retail Giant TJX recent disclosure – as many as 45.7 million
customer records stolen by intruders
 The President's Identity Theft Task Force has plans for creating
a national identity theft law center and educating the public on
the dangers of identity theft
– Government seeking national data protection standards in the
private sector
– Task force aimed recommendations at both private companies and
government agencies
 Ordinary citizens now beginning to protect themselves through
the use of an alias
– In future ordinary citizen use of alias could out number use by
criminal element
– Still the fastest growing crime in the world

Putting SSN back in the box
 ID Task Force recommends reduced use of
SSN as an identifier but knows patients must
still be enumerated
 Social Security Administration knows of wide
spread breaches in use of SSN
 Some have proposed scrapping the SSN
system and starting over
 Use of National ID system may eventually
replace SSN and also solve Patient ID and
other problems (Bio-surveillance, immigration)

Bio-Surveillance
 Anticipated to be used by both public health and homeland
defense
 Expanded use of Healthcare technology in all areas to serve the
public interests
 Requires the use of both Healthcare Informatics and
Geographic Informatics
 Must exploit data from multiple sources and monitor for:
– Naturally occurring epidemics
– Potential Bio-Terrorism
 Delicate balance between your personal freedom’s and the
safety and security of an improved quality and security of life

Your Digital Identity
 Pieces of your personal identity scattered across multiple
domains:
– Employer
– Social Security Administration, IRS and State Tax Agencies
– Financial Institutions and Brokers
– Insurance Carriers
– Retail, Utility and Telecommunication Providers
 Internet has caused our digital identities to become even more
numerous and more fragmented
 Ability to coordinate, interact and control our identity has
become increasingly more difficult
– Name, Address, SSN, Dates of Birth, Death, Marriage, Divorce
– Account Numbers, User ID’s and Passwords
– Transaction Data, IP Addresses

Patient Identification Technology
 Six-digit compression of the patient’s health ID
number
– Could eventually be expanded to replace SSN
 Expanded use of Biometric technologies:
– National Health ID Card based on a number of key
Personal Biometric Indicators:
 Any one of which would be difficult to duplicate
 Used in combination would be highly unlikely it could ever be
reproduced
– What arbitrary number is assigned to you, therefore
becomes meaningless from a
 Personal smart card technology

Trust Hierarchy and Authentication
 Necessary to ensure Health Information in the hands of the right
people at the right time (homeland defense, public health,
 A dozen different states are already competing to host a new,
$450 million government Bio-Defense research lab that will
employee approximately 300 researchers
 Extensible hierarchical based authentication trust trees
– Includes standards for optimal use by both government and private
providers
– Current recommendations include accelerating the definition and
establishment of same
 Wider use of Federated Identity Management (FIM)
– Security Assertion Markup Language (SAML)
– Federated Trust Models
 Authentication means for anonymous entities

Vortex of Convergence
 Convergence of Informatics
 Convergence of Standards
 Convergence of Legislation
 Convergence of Globalization
The Convergence of multiple phenomena is driving us to
towards a seemingly unstoppable future which will
directly impact our identities (both personal and
digital) of the future …

What is the Future of your personal identity?
 An individuals comprehension of him or herself as a discrete,
separate identity:
– Personal Identity is defined by you!
– Can anyone really steal your personal identity?
– Is a person at one time the same person at another time?
 Your electronic Identity is defined by others:
– Financial Identity (Credit and Portfolio Profiles)
– Health Identity (Pre-Existing Conditions)
– Criminal Background Checks
– Employment Histories
– Address Information
– Business and Commercial Identity
 What responsibilities do we have as IT Professionals?

Overview
 Informatics
 Healthcare
– HIPAA

QUESTIONS?
Thomas (Pete) Petry
Cell: 202-367-5971
Email: TJPetry@yahoo.com
Thank You
for your time!

The future of your identity

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