Biomedical Health Informatics the Key to the 'ICT Vision' by bak27323


									Biomedical & Health Informatics: the Key
 to the ‘ICT Vision’ needed to enhance
     health status of individuals and

   Third International Symposium on Medical Information
               & Communication Technology
               Don Detmer, MD, MA,
              President & CEO, AMIA;
        Professor of Medical Education, UVA
                 26 February 2009
As for the future, your task is not to foresee, but
                    to enable it.

                 de Saint-Exupery
                       This Talk

• Introductory Comments
• What do societies want as outcomes & what is involved?
• What should we do about healthcare?
• Current status of HIT (& ICT) – IT v. ICT & Role of
• What new Vision & Model is needed?
• How can Biomedical & Health Informaticians help?
 Introductory Comments: HIT, ICT, Informatics

• HIT & HCT – Hardware & Software - ‘nouns’
     • Information Technology
     • Communications Technology
• Informatics: “Harnessing the technology to
  achieve desired ends” – ‘verbs’
   “Informatics is the science of the use of information.”
     • Informatics Organizations
         – IMIA - International Medical Informatics Association
           (North America – COACH & AMIA)
         – American Medical Informatics Association &
            American College of Medical Informatics
               A Professional Home for Biomedical
                 & Health Informaticians

• A US authority regarding the sound application of health-
  oriented ICT & related issues
• National leaders in informatics education, policy, &
• American Medical Informatics Association
   – See
• American College of Medical Informatics (AMIA’s College)
   – Honorary society of distinguished informaticians
     elected by their peers
  AMIA Board of Directors
• Dominik Aronsky                    • Sarah Ingersoll*
• David Bates *                      • Kevin Johnson
• Eta Berner                         • Rita Kukafka
• Helen Burstin                      • Gil Kuperman
• Atul Butte                         • Christoph Lehmann
• Catherine Craven                   • Joyce Mitchell ^
• Connie Delaney *                   • Judy Murphy
• Don Detmer *                       • Paul Tang *
• Paul Gorman                        • Bonnie Westra
________________                     • Nancy Lorenzi#
Past Board Chairs:                   _____________
   Charles Safran & Paul Tang
                                     Detmer (‘04-’09); Ted Shortliffe ‘09-
    * Executive Committee ^Ex-officio # Chair -elect
               AMIA Members - 2009
• ~4000 members (53 nations)
• Of those indicating an area of
   – 74% clinical health care
      informatics & clinical       16 10
      research informatics
   – 16% public
      (most rapid growth)
   – 10% translational
         AMIA Members Alternate Profession
           (Self-identified by frequency)
•   Clinician
•   IT Professional, including engineers
•   Administrator and/or manager
•   Researcher, including engineers
•   Educator
•   Student/trainee
•   (None identified)
•   Consultant
•   Librarian
                     AMIA’s Mission

• With others, create health communications &
  information technology & systems that transform health
  care & measurably improve health status.
• Strengthen the ability to create & manage the science
  & knowledge base of health and health care, including
  its timely access.
• Actively participate in global health information policy,
  technology, & informatics with particular emphasis on
  needs of underserved populations.

                           “Do good, do it well, and with others
                                   help shape a healthy future.”
 AMIA’s Domains for Informaticians
• Applied Clinical Informatics (Informaticists?)
   – Direct health care delivery
   – Personal health (consumer health) management
• Clinical Research Informatics
   – Clinical research
   – Clinical trials
   – Methods used in translational bioinformatics
• Public Health/Population Informatics
• Translational Bioinformatics (the research itself)
• (VISION – Visualization, Imaging, & Simulation
       in Organs & Networks)
           AMIAble Informaticians
• Through informatics, transform health & health care for individuals
  & populations*
   – Care that is Equitable, Efficient, Effective, Patient-centered,
     Timely, Safe
• Transform informatics from a serious avocation to a formally
  recognized health profession
  What Vision for health should societies
    seek to achieve for their people?

• Healthy people living in an altruistic society
  – Social Determinates of Health ~50% of health status
     • Meaningful employment
     • Shelter
     • Education
     • Safe environment
  – Healthcare that is equitable, efficient, effective,
    patient & population-centered, timely, & safe
          What is involved?

•   Biology
•   Health behaviors – Values & Standards
•   Social determinants
•   Healthcare services

• (Plus many additional scientific
disciplines if one chooses to act to change
       How are emerging Informatics
           disciplines involved?
• Biology – Translational Bioinformatics
• Health Behavior – Public/consumer Informatics
• Social Determinants – Public Health & Population
      Health Informatics
• Healthcare Services – Clinical & Clinical Research
           Q: What is USA achieving today
       with respect to Health Determinants &

    A: Neither greater Health nor greater Altruism
• Rising unemployment
• Rising loss of homes
• Rising loss of insurance
• Rising numbers of poor children
• Rising imbalance among groups for key social goods
• Rising health care costs with increasingly poorer system
       performance when compared to other nations
• Increasingly restrictive regulations with respect to
  access to personal health information
What is required to achieve better health &
             greater altruism?
Actionable Standards pegged to a Health &
  Altruistic vision can create a better balance
  among competing social goods
  –   Altruism
  –   Freedom
  –   Healthy Individuals
  –   Healthy Communities
  –   Personal privacy
  –   Personal autonomy
  –   Useful Knowledge
 Standards are explicit representations that
reflect our view of the world & hence, what
      we choose to recognize & value.

      Values: Moral Attitudes & Habits

  Standards inevitably lead our thinking toward
  certain measures.
The Link between Standards & Values

The Surgeon: What possible difference does
     it make what my standards are?
Elephant Man: Because it is your standards
               we live by.

   - Paraphrased from “The Elephant Man”
        Partial Taxonomy of Current Standards

•   Data Messaging
•   Identifiers
•   Quality
•   Safety
•   Technology
•   Devices
•   Decision Support
•   Research
•   Etc.
    What are major recent HIT standards development,
     selection, &/or implementation achievements? *

• HITSP implementation specifications
• Structured product labels for approved drugs - disseminated via DailyMed,
  linked to RxNorm & other knowledge sources, e.g.,
• Formation of International Health Terminology Standards Development
  Organisation (IHTSDO) as needed & promising model for global
  collaboration to support & promote international adoption of standard
• Proactive expansion of LOINC to include genetic tests & newborn
  screening tests
• New version of Surgeon General's Family Health History tool, with
  standards, e.g., SNOMED CT, HL7, built in
• AHIC Working Group on Personalized health care standards matrix [tests
  (LOINC) that detect conditions (SNOMED CT)] for newborn screening.

             * Detmer: NCVHS Testimony 24 February 2009
Where are Health & Healthcare Standards today?

• Current Standards activities focus mainly on IT
   – Many if not most are not actionable in EHRs
      • Ex. Clinical Quality Guidelines
• Little explicit activity to create actionable CT
• Currently not organized to a Vision of desired health
  outcomes (mostly developed from a bottom up
            HIT (& HCT) Standards Processes

Then – Bottom up             Emerging – Top down
+ Well vetted                  + Actual standards can be set
+ Experts committed            + Potential for globalization
- Too many standards           + Potential for Stable Funding &
- Slow to achieve global          Maintenance/Access
    harmonization              - Needed standards don’t get
- $s & Site(s) for                considered or move forward
                                  for political reasons (wrong
   Maintenance & Access           cooks stirring the pot?)
- Limited vision               +/- Sufficient vetting
+ Devil you know               - Unintended consequences
- Idealism over pragmatism     - Idealism over pragmatism
We love standards. That’s why we have so
many of them…even for the same things.

        Anonymous (or You tell me)
An Outcome Model for Standards
    Development is needed.

 We focus far too disproportionately on
     standards for HIT (Information).
We ignore much needed standards for HCT
Where are Health & Healthcare Standards today?

While both IT & CT are important & may overlap, people
   including humans prefer to communicate to become
   informed, yet most of policy & thinking focuses on
   information, including policy for privacy,
   confidentiality & security.
Reason for this being backward:
 IT preceded CT
We went from paper-based medical records to computer-
   based medical records; only then did the
   communications ( CT) revolution hit us.
       - Only 1/3 of population are data-driven
       but all of us like to communicate.
          A difference is a difference
            if it makes a difference.
• We need complementary standards for IT & CT.
   Ex: Advanced Directives for End-of-Life care.

   IT End-of-Life Standards describe templates to
     accurately express information regarding personal
   CT End-of-Life Standards assure communication of: 1)
     currency of directives & 2) that current directives
     are actually delivered to relevant caregivers in a
     timely manner.
   Quality measurement v. quality improvement.
          A difference is a difference
            if it makes a difference.
We need complementary standards for IT & CT.

• IT Standard for Clinical Decision Support
   – Clinical quality guideline in computer-executable
     language for use in EHRs.
• CT Standard for Clinical Decision Support
   – Wireless automatics update of the above IT standard
     into a clinician’s PDAs & EHRs
   – From quality measurement to quality improvement.
  We must develop a robust Outcome and
      Process Model . Otherwise…

That which is measured drives out that which
               is important.
                    - Rene Dubos
    What HICT standards, development,
selection, &/or implementation challenges

 • Decision Support
 • Personalized Care
 • Population Health Support
 • Semantic interoperability, tying SNOMED CT to record
 • Clinical knowledge models that reflect clinical best
 • Selection challenges
    – For each of the above
   What should drive the Vision for the Model of
             HICT & HCT standards?

The Vision for the OUTCOME MODEL should reflect
  important thinking from
  Groups with other key reports relating to Quality,
  Safety, Public Health, Privacy, Health Information &
  Communication Technology and its Use; Computer-
  based Health Records, Rural Health, & Research.
Then, the processes for developing relevant HICT
  standards will reflect better on core human values &
  also create global markets for products that adopt
  What Vision for Health should societies
    seek to achieve for their people?

• Healthy people living in an altruistic society
  – Social Determinates of Health ~50% of health status
     • Meaningful employment
     • Shelter
     • Education
     • Safe environment
  – Healthcare that is equitable, efficient, effective,
    patient & population-centered, timely, & safe
                  Part of the New Model
     Today there is scant policy support for Americans to
        have a choice b/n Altruistic v. Self(ish) Goals

Today HIPAA limits access to Useful Knowledge, e.g.
  legitimate Biomedical & Health Research*:
   1) Today, no simple consent generic procedure to allow citizens to have a
  unique personal health identifier to facilitate care & sharing personal
  health data for legitimate scientific research
   2) Increasingly expensive unfunded mandates keep being enacted
  without clear health benefits & that are likely to further hurt biomedical &
  health research supported through public funds
    Ex. New regulations on de-identified data & what will fall under minimum
    necessary data
  3) Few standards explicitly that support solely community benefit
  4) Persons cannot opt for a personal unique health identifier

              *AAMC (earlier), AAHC (2009), IOM (2009) Reports
         What is required for Major
          International Progress?

A Outcomes Model can then lead to relevant HICT
  Process Standards for
• Equity
• Patient-centeredness
• Timeliness to match growing focus on
• Effectiveness, Efficiency, & Safety

       ( Basically, whatever the particular nation
           may needs.)
HICT Standards processes should flow form
          the outcomes model.

Timeliness, Efficiency, Effectiveness, Safety, etc.

Process Model Example: Label data at source –
• LOINC on test kits
• Outputs from test devices labeled with LOINC
• RxNorm available with drug is approved & SPL is
How can Biomedical & Health Informaticians help?


Infrastructure: Standards, Terminology, Classifications
              Global Components of Needs &
        20/20 Vision for Assuring e-Health Capacity

                            “From Silos to Systems”

         Policy                                           Executive
           &                                              Seminars;
       Leadership                                       Leadership ID,
                                                          Training &
      Human Capital                                  PhD; Masters; other
                                               __Professional Informaticians__
        (eHealth                                   Clinician / Public Health
        Workforce                            __________Champions__________
        Capacity)                             20/20 Informatics Building Blocks -
                                                 Knowledge & Skills Offerings

      State of ICT                            National Readiness Assessment
Technology Infrastructure                       Instrument; other tool kits

      Components                         Vision for eHealth Workforce
    Summary of AMIA’s Nationally Focused Informatics
                  Workforce Support

 Annual Policy Conference; Policy White                 Executive
  Papers; Advocacy – Invited Testimony                  Seminars;
CMIO Boot Camp; Executive Suite Seminars;             Leadership ID,
  Academic Strategic Leadership Council                 Training &
    Academic Forum; Clinical & Public               PhD; Masters; other
      Health Specialty Certification          __Professional Informaticians__
                10x10;                            Clinician / Public Health
        Informatics Building Blocks            “Informatics Building Blocks”
                                               Knowledge & Skills Offerings

                                             National Readiness Assessment
    E-Learning; DPR Certification
                                               Instrument; other tool kits
 MAJOR INITIATIVE: Make Informatics a formally
         recognized health profession

• National infrastructure to support Informatics
• Infrastructure to support professional informaticians
  (clinical, public health, research, translational)
   – Formal training & certification for Applied Professional Clinical,
     Research, & Public Health Informaticians
• Educational offerings for current practicing non-
   – Training short courses/offerings for health & care settings
• Professional/Public Education & Advocacy about
  Electronic Health Records
        Informatics as a formally recognized
                 health profession

• Supportive Infrastructure for ‘Professional Home’
      • Academic Forum
        45 Educational Departments/Units
         – Curricula; Promotion criteria; Salary survey
      • Academic Strategic Leadership Council – Educate
        & Advocate
         – Presidents, VPs, Provosts, Deans Advisory Group
           Informed Advocates
             » Common Inter-professional Informatics
               Competencies Curriculum Project
             » 10+ health professions
        Goal: Common Informatics Educational
        Curriculum for all Health Professionals

Institute of Medicine’s [IOM] Health Professions Education
   Summit (2003) core competencies for future
•   Provide patient-centered care
•   Work in interdisciplinary teams
•   Employ evidence-based practice
•   Apply quality improvement &
•   Utilize informatics.

Time Line:
    – Years 1-5 Create Curriculum, Test/Validate in a few institutions Revise
    – Years 5-10 Deploy widely
     Common Inter-professional Informatics
     Competencies – 10+ Health Professions
                  Knowledge, Skills, Attitudes
• Competency Levels:
     - Awareness
     - Semantics
     - Pragmatics
• Competencies Domains:
     - Communication
     - Documentation
     - Ethics of access and use of person-specific health information
     - Information seeking & utilization
     - Patient Engagement
     - Problem Solving
     - System approach to practice
 Current Offerings:            *Paula Otero et al, Hospital
 • Introduction to               Italiano, 1st Intrntl
 Biomedical & Health             Version; Singapore; Hong
 Informatics (3 & 1*)            Kong coming
 • Research Informatics
 • Translational               Also coming:
        Bioinformatics         • Consumer/Personal
                                 Health Informatics
 •Nursing Informatics
 • Public Health Informatics
 20/20 Health Informatics
  Building Blocks (HIBBs)
Planning Meeting          Current Tasks:
Rockefeller Foundation    • Developing topics
support                   • Needs
                              – Languages
London, Wellcome Trust,       – Medium : web, paper, self-
                                learning modules
December 2008             •   Developers
                          •   Access strategy
N.T. Cheung, MD,          •   Cost management
Hong Kong, Chair          •   Logo
Digital Patient Record Certification
   Examination and Study Guide*
                                  • Who should use DPRC
                                  • Any academic institution
                                    training qualified
                                    healthcare professionals
                                    that will use a digital
                                    input device to manage
                                    patient records in a HIS
                                    & thereby can effect the
                                    outcome of a patients
                                    treatment or legal rights.


        * A collaboration between AMIA & CS
 Thank you again for the invitation.

 My presentation will be posted at

American Medical Informatics Association
    4915 St. Elmo Avenue Suite 401
       Bethesda, Maryland 20814
             301 657-1291
Summit on Translational Bioinformatics
•   March 15-17, 2009
    Grand Hyatt San Francisco
    San Francisco, CA
                                Annual Symposium
                                • November 14-18, 2009
Spring Congress                   Hilton San Francisco
• May 28-30, 2009                 San Francisco, CA
  Walt Disney World Swan
  Orlando, Florida

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