EHealth: An International Perspective

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E-Health An International Perspective

• Don E. Detmer, MD, MA, FACMI
• President CEO
• American Medical Informatics Association
• Professor of Medical Education, University of
  Virginia
• 1 November 2005
• Dunblane, Scotland

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American Medical Informatics Association

http//www.amia.org
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What is E-Health?
Any all aspects of the use of computers
telecommunications technology, especially the
Internet, for health purposes. (36 definitions
in literature) Pagliari C, Sloan D, Gregor P,
Sullivan F, Detmer DE, Kahan JP, Oortwin W,
McGillivray S What is eHealth (4) A Scoping
Exercise to Map the Field. JMIR 2005 (Mar31)
7(1)e9. see http//www.jmir.org/2005/1/e9/
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What is E-Health?
e-health is an emerging field of medical
informatics, referring to the organization and
delivery of health services and information using
the Internet and related technologies. In a
broader sense, the term characterizes not only a
technical development, but also a new way of
working, an attitude, and a commitment for
networked, global thinking, to improve health
care locally, regionally, and worldwide by using
information and communication technology.
(adapted from Eysenbach) Eysenbach G.
What is e-health? J Med Internet Res 2001 Jun
183(2)e20. FREE Full text Medline
CrossRef
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Key Markers of Success

• Health status - individual collective -
  measurably improves over time
• Economically successful companies products
• Citizens actively assume responsibility for their
  own health data
• Continued access to person-specific data for
  research improvement

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Global Status Today

• e-Health in nations regions around the world
  varies greatly.
• In general, health applications lag well behind
  developments in air travel, banking, e-commerce,
  entertainment, defense, finance.

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disruptive technologies business models
may threaten the status quo but will ultimately
raise the quality of health care for everyone.

• Christensen, Bohmer, Kenagy Harvard Business
  Review
• Sept-Oct 2000

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Simon Says (Herbert A. that is)

• What information consumes is rather obvious it
  consumes the attention of its recipients. Hence a
  wealth of information creates a poverty of
  attention, and a need to allocate that attention
  efficiently among the overabundance of
  information sources that might consume it.

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Disruptive Technologies

• Examples
• Bioinformatics genomics / proteomics /
  pharmacogenomics new tests medications
• Bioengineering minaturization
• Knowledge Management Clinical Informatics
  e-Healthcare decision support at time point
  of care

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Do You Like Science Fiction? Go for the real
thing. Subscribe to Nature or Science Magazine

• Dont be blue about your genes.
• Genes Disease
• Gene Fusion Prostate Cancer
• New Haplotype Map May Overhaul Gene Hunting
• Jennifer Couzin
• Science vol. 350, October 2005

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Growth of Medical Knowledge

• 400,000 new articles per year added to MedLine.

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AMIAs Definition What is e-Health? v.4

• e-Health is the use of information technology to
  transform health through health care systems that
  are equitable, safe, effective, efficient,
  patient-centred, timely, equitable.
• - IOM, Crossing the Quality Chasm, 2002
  (http//www.nap.edu)

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NHII Goals Australia, Canada, New Zealand, UK,
USA

• Patient safety must be assured quality of
  services must be improved.
• Population health, primary care, chronic
  disease management capabilities are pivotal.
• A robust information infrastructure that enables
  connectivity among providers is essential.
• The health system electronic patient records
  must be patient-centered support patient
  empowerment while maintaining patient privacy.

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Current Status of E-Health

• What it is today.
• Mostly non-interactive websites
• Some interactive sites
• Some research sites
• Viable E-health applications

• What it is not today.
• Globally available
• Supported by a robust infrastructure
• Just-in-time
• Just-for-me
• Standardized
• Culturally fit

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Health IT DeploymentEurope v. U.S.A.

• Primary Care Dominates
• Planning Central Deliberative
• Focus on patient education

• Systems Dominate
• Planning Central, Peripheral Dynamic
• Focus on patient involvement

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The New Reality We must work smarter.

• Aging Populations
• Chronic Illness
• Rising Threats to General Population
• Weather
• Bioterrorism
• Global Infectious Disease

• Healthcare Costs are expanding.
• National Budgets are finite.
• Genomic Science must help.
• Health IT must help.
• Preserve Health.

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IOM Reports1999 and 2001http//nap.eduwww.nap.e
du

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Quality of Care

• The current system of care delivers accurate care
  54.9 of the time.
• U.S. Data 2000-2001
• McGlynn, Elizabeth, RAND
• NEJM, 2003

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Voltage Drops from Clinical Problems to Best
Outcomes

• Inaccessible care rationing, no service
  orientation
• Mistaken diagnosis errors of cognition, etc.
• Knowledge management issues -
• Ignorance right diagnosis but dont know what to
  do and nobody else does either science is weak
• Stupidity nobody knows but we think we do
• Poor prognostic information assessment
• Poor execution of care
• interrupted, tired, too busy to look for
  answer, no system support, marginally skilled,
  bad apple, poor education of patient,)

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Health Care Delivery Systems are in Need of
Fundamental Change.

• The current care systems cannot do the job.
  Trying harder will not work. What will is
  changing systems of care, knowledge management,
  
• appropriate computer-based health records with
  decision support.

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Some Big Complex Issues

• Computing meets Biology Care
• Quality Safety - Chasms to Cross
• Information Knowledge Explosion
• Rising Consumerism Accountability
• Chronic Illness Aging
• Human Rights Movement as a Secular Religion
  eroding Social Trust

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The Organisational Climb to Quality, Safety
Excellence

• Paper Records Natl Service Frameworks
• Letting it happen
• Helping it happen
• Computer-based Health/Medical Records Process
  Redesign
• Making it happen
• Fool-proofing
• Evidence-based Adaptive Decision Support
• Just in time
• Just for me

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Complex Adaptive SystemsBirds, Herds, Schools

• Observe three simple rules
• Move to the center of the group.
• Keep up with the group.
• Dont hit anyone.

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Six Rules for Health Care Delivery System

• Safe
• Effective
• Patient-Centered
• Timely
• Efficient
• Equitable
• IOMCrossing the Quality Chasm, 2001

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Leading Change in Complex Adaptive Systems

• Set simple rules minimum specifications
• Create conditions for system to evolve over time
• Create space for creativity local actions
  within the system
• Self-organisation

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Life in the Complexity Zone
Chaotic
Complex
Simple
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PERSONAL Records Consumer e-health records
Infostructure Knowledge, Communications IT
First-class Health Care
PATIENT Records Clinic Hospital Records
PUBLIC HEALTH/ POPULATION Records Community
Records Data Banks Repositories
Interlocking computer-based health records
(C3PRs) supported by knowledge IT infrastructure
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Digital Divide

• 93 of Physicians report computer at work
• 25 get email from patients
• 21 send email to patients
• 17 report using EHR
• Survey family physicians School of Public
  Communications Syracuse University July 2000
• 25 of online consumers say email usewould
  influence their choice of a doctor
• Delbanco T and Sands DZ NEJM April 2004

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Difficulties Inherent in the Perspectives
Theories of Medical Work

• Current Clinical Systems are designed to be
• Objective
• Rationalize
• Linear
• Normalize
• Solitary
• Single minded
• Clinical Work is fundamentally
• Interpretative
• Multitasking
• Collaborative
• Distributed
• Opportunistic
• Reactive
• Interrupted frequently
• Wears RL, Berg M, Computer Technology and
  Clinical Work Still Waiting for Godot
  JAMA. 20052931261-1263.

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PHRs ePHRs Emerging to Support Chronic Disease
Management

• Scotland Renal Patient View (www.renalpatientview
  .org)
• UK Diabetes UK is exploring migration of
  paper-based patient held-summary sheet to ePHR
• New Zealand Commercial ePHR, Doctor Global
  enables remote tracking evaluation of health
  conditions over time (e.g., asthma, cholesterol,
  diabetes www.doctorglobal.com)
• Australia My Health Record is a paper-based
  record for patients with chronic illness in New
  South Wales
• Canada ePHR being developed for diabetes
  management in New Brunswick (National Research
  Council Institute for Information Technology)

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Assured Process Improves Outcomes and Reduces
Costs

• Prevention is preferred to detection
• The patient is central
• Focus on the system and not the individual
• Variation in clinical practices is endemic
• Quality can be constantly improved
• - Reed Gardner, 1995.

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Evidence-Based Adaptive Decision-Support Systems

• Evidence-based
• Locally generated from literature
• Decision-support systems/templates with
  just-in-time knowledge service at point of
  care
• Adaptive continuously studied improved
  against care delivered patients outcomes
• - Sim, Gorman, Greenes et al, JAMIA 2001

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Evidence-Based Adaptive Decision-Support Systems
Clinical

• Alert high or low lab values
• Assist tailoring antibiotic choices
• Calculate Suggest adjusting mechanical
  ventilator
• Critique rejecting an order
• Diagnose dx in clinical practice
• Interpret ECG
• Predict risk of mortality with severity score
• Remind give jab
• Structure thinking
• Randolph et al JAMA 1999, from
• Pryor, 1990

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An Expanding View of Healthcare IT
Future Marketplace
Patient Safety
Clinical Trials
Consolidation
Electronic Health Record
Public Health

• Current Marketplace
• Fragmented
• Replacement
• Hospital-Centric

PersonalHealthRecords
communicate participate collaborate explore
learn
Patient-Centric
Family-Centric
National security
Health Record Banks
Interoperable
Genomic Data
Consumer Oriented
Source Safran 2005
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Why Engage Patients Informal Caregivers?
The Benefits of the Informed Patient

• Better informed patients are
• Less anxious
• Treatment starts earlier
• Follow advice better, esp. chronic illness
  management
• Lower risk interventions are selected
• Healthcare costs drop through more
  self-management a more efficient use of
  resources
• More satisfied litigate less
• Detmer, Singleton et al- The Informed Patient
  Report I - 2003

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Fractured Patient Experiences

• Communications
• Erratic, Inconsistent, Obtuse, or Absent
• Information not layered to meet needs
• Issues of Trust Dignity
• Proven Uses of Technology e-Learning Not
  Exploited

Ending the Document Game Report of the
Commission on Systemic Interoperability. US Gov.
Printing Office, 2005
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e-Healthcare Models

• Web-based Education/Support
• One Way, Two Way, Chat / Support Groups
• E-mail only
• Internet Mediated Integrated Care (Clicks
  Mortar)
• Appointment scheduling
• Access to Electronic Medical Record
• Monitoring
• Verbal
• Device
• Prescription refills
• Consultation support
• Formal Decision Support

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SUSTAINS (Supports Users To Access Information
Services)

• Provides users with access to their own medical
  records through the Internet in Uppsala Sweden
• One-time passwords distributed through cell
  phones
• Provides access to data from hospital information
  system, laboratory database, GP medical records

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Lessons from SUSTAINS

• Less complex technical environment is better for
  users
• Patients were most interested in seeing their
  medical records, booking visits, communicating
  with health care providers, viewing prescription
  lists, reading fees
• Most users were not concerned about security
  risks
• Appears to have increased confidence trust in
  physicians
• Eklund B and Joustra-Enquist I. 2004. SUSTAINS
  Direct access for the patients to the medical
  record over the Internet. In E-Health Current
  Situation and Examples of Implemented and
  Beneficial E-Health Applications, I Iakovidis, P
  Wilson and JC Healy, eds. Amsterdam IOS Press.

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Requirements for Robust e-PHRs

• System
• IT Infrastructure (e.g., Unique patient
  identifier)
• Health Care Provider Willingness to Interact w/
  patients through ePHRs
• Funding Mechanism
• Citizens
• Health Literacy
• Computer Literacy
• Access to Technology

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Current Use of PHR

• Modest use of paper health records (40)
• Extremely low use of electronic personal health
  records (2-5)
• High percentage think they should

2004 Harris Interactive Inc.
Courtesy of Safran 2005
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What Do US Patients Say They Want?

• Over 70 percent of respondents would use one or
  more features of the PHR
• Email my doctor 75 percent
• Track immunizations 69 percent
• Note mistakes in my record 69 percent
• Transfer information to new doctors 65 percent
• Get track my test results 63
  percent
• Almost two-thirds (65 percent) of people with
  chronic illness say they would use at least one
  of the PHR features today, compared with 58
  percent of those without chronic illness.

Source Connecting for Health and FACCT,
random-digit dialing telephone survey of 1,750
adults, May 2004
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Patient Interaction

• Collect Information
• Symptom diaries
• Administrative Tasks
• Scheduling
• Rx Refills
• Referrals
• Clinical Tasks
• Medication Refills
• Education
• Self-care
• Drug Interactions
• Reminders
• Preventive Health
• Communication
• Secure email
• Explanation of Benefits

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Data the PHR

• Two types of data
• Patient entered Information provided directly by
  the patient or caregiver.
• Professionally entered Information provided by
  entities involved in the delivery of or
  reimbursement for care (e.g., clinicians,
  pharmacies and pharmacy benefit managers,
  insurance companies).
• Challenges
• Applications that rely solely on patient-entered
  data have not proven to be attractive to large
  numbers of users or economically viable to
  vendors.
• Applications that attempt to exchange
  professionally entered data face the challenge of
  disparate, non-standardized often reluctant
  institutional sources.

Source Safran 2005
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• Mail
• Secure
• Automated routing
• Task assignment

• Services
• Prescription refills
• Appointment requests
• Referrals
• View bill

• Records
• Secure
• All CG records
• Upcoming appointments
• Meds/Problems/Results
• Personal records

• Education
• Info prescriptions
• Patient selected links
• Predefined collections
• Videos

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Adherence Improved

• Connecticut iHealthRecord Adherence Service
  Clinical Trial
• 100 Patient Study Group vs Control Statins
  Antidepressants
• 6 Month Results Study is Ongoing

• 2/3 believe that the Adherence messages from
  their doctor help them better understand their
  medication better manage their condition.
• 95 found the Adherence Service easy to use
  agree that the service could be an important
  part of helping busy doctors provide extra care
  and information to patients.
• 40 Reduction in medication drop-off (6 Study
  Group vs 10.5 Control) based upon initial payor
  claims data
• The study will continue expand to three
  locations move to thousands of patients with
  the launch of the iHealthRecord

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Issues with PHR

• Security Privacy
• Health Literacy
• Workflow
• Costs ROI
• Marketing
• Operations
• Passwords Support
• Service Level Expectations
• Patient Entered Data
• Liability

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Patient Control of Information
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Lessons from Early Adopters

• Clinicians
• Physician promotion is key to getting high
  consumer adoption in most places.
• Physician acceptance requires large up-front
  efforts to gain buy-in.
• If PHR is viewed as beneficial only to patients,
  its hard to get physician support.
• PHR is not likely to be incorporated into
  clinical workflow without addressing EHR
  integration.

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Lessons from Early Adopters

• Patients
• Patient-provider secure messaging, online
  refills, lab results, medication lists, disease
  management plans are particularly useful.
• Patient-provider messaging wins over an
  enthusiastic subset of both patients doctors,
  does not overwhelm the inbox of doctors.
• Patients feel more empowered when they have
  access to their office chart information, many
  early physician adopters find that helpful.
• People with chronic conditions are most likely to
  need use PHR-type applications.

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Rules Tools of e-Mail Communications with
Patients

• Patient has access 24/7/365
• Rules of Engagement
• Assume 36 hours turnaround for reply
• Doctors team sees record
• Dont e-mail for help with serious acute problems
• Must offer training as needed
• Written Informed Consent
• Secure systems for transmission

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General Procedures for Staff

• Maintain as a Formal System
• Inform Patient Document Their Acceptance
• Recognize as formal communication with patient
• Confidential
• Part of formal record
• Triage respond with FAQs as appropriate

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Biggest Problems

• Not saved in patients medical record
• Not following procedures
• More likely to be on staff than patient side
• Inappropriate use for type of message
• (Payment)
• (Poor computer skills)
• (Liability risks are low patients like it)

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Efficiency

• 71 MDs spend 5 minutes/msg
• May partially offset phone calls
• Modest volume of messages
• lt 1 per day per 100 pts (BIDMC)
• Only 9.5 patients use it

Source Manhattan Research Taking the Pulse 5.0
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From Patient Satisfaction to Trust

• Replaces many phone calls
• Most questions are reasonable answerable by
  nurses or other staff
• Patients only rarely abuse system
• Patient need training education to use it
  properly
• Security Confidentiality manageable

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Why Use It?

• Improve
• Communication
• Patient education
• Patient satisfaction
• Efficiency
• Enable time shifting
• Reduce telephone time costs?
• /- Provide competitive advantage
• Possible new revenue stream
• More evaluation research is needed.

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Conclusions

• Useful for clinical communication
• Improved Efficiency
• Reduces telephone tag
• Allows Staff to respond to some calls
• Appropriate use essential
• Complementary to other forms of communication
• Practical policies important

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N Engl J Med 35017 Apr 22, 2004
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Elements of Successful ePHR Implementation

• National patient identifiers or defined approach
  to authentication
• Strong infrastructure (e.g., standards, privacy
  framework technical support)
• Sound funding strategy
• Buy-in by health care professionals

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Warning Stand-alone ePHRs May Be Insufficient

• The Markle Foundations Connecting for Health
  concluded that disease management applications
  that encouraged patients to enter very detailed
  information pertaining to a single chronic
  condition may provide some immediate benefit to
  users, but simply offering people a means of
  recording information on a daily basis does not
  make them better managers of their health or
  health care. Without a clinician at the other
  end of the application continually providing
  advice, making modifications to prescriptions or
  otherwise providing them with some ideas to help
  better manage their condition these systems were
  doomed to fail.
• Connecting for Health (Markle Foundation). 2004.
  Connecting Americans to their Healthcare. Final
  Report of the Working Group on Policies for
  Electronic Information Sharing Between Doctors
  and Patients. www.connectingforhealth.org.

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Ten by Ten,

• A Beginning
• Train 10,000 health care professionals in applied
  health and medical informatics by the year 2010.
  
• A goal of the American Medical Informatics
  Association in partnership with Oregon Health
  Science University (OHSU) and other participating
  informatics training programs.

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On-line Curriculum

• Overview of Discipline and Its History
• Biomedical Computing
• Electronic Health Records and Health Information
  Exchange
• Decision Support Evolution and Current
  Approaches
• Standards Privacy, Confidentiality, and Security
  
• Evidence-Based Medicine and Medical
  Decision-Making
• Information Retrieval and Digital Libraries
• Bioinformatics
• Imaging Informatics and Telemedicine
• Other Informatics Consumer Health, Public
  Health, and Nursing
• Organization and Management Issues in Informatics
• Career and Professional Development

On-line modules followed by an intensive
in-person sessions led by experienced leaders in
the field.
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• Major New Initiatives

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Additional References

• Berner ES, Detmer ED, Simborg D.Will the wave
  finally break? A brief view of the adoption of
  electronic medical records in the United States.
  J Am Med Inform Assoc. 2005 January-February12(1)
  3-7.
• Detmer DE Singleton P Policy for Informed
  Patients A European Perspective. Harvard Health
  Policy Review, 2004 Spring5(1)81-88.
• Yasnoff WA, Humphreys BL, Overhage JM, Detmer DE,
  Brennan PF, Morris RW, Middleton B, Bates DW,
  Fanning JP.A consensus action agenda for
  achieving the national health information
  infrastructure.J Am Med Inform Assoc. 2004
  Jul-Aug11(4)332-8.
• Detmer DE. Building the national health
  information infrastructure for personal health,
  health care services, public health, and
  research.BMC Med Inform Decis Mak. 2003 Jan
  063(1)1.
• Detmer DE. A new health system and its quality
  agenda.Front Health Serv Manage. 2001
  Fall18(1)3-30. Erratum in Front Health Serv
  Manage 2001 Winter18(2)42.
• Detmer DE. Information technology for quality
  health care a summary of United Kingdom and
  United States experiences.Qual Health Care. 2000
  Sep9(3)181-9.
• Detmer DE.Your privacy or your health--will
  medical privacy legislation stop quality health
  care?Int J Qual Health Care. 2000 Feb12(1)1-3
• Commission on Systemic Interoperability Ending
  the Document Game. USGovPrinting Office 2005 see
  Ending the Document Game.Gov
• Detmer DE, Steen EB The Academic Health Center
  Leadership and Performance. Cambridge University
  Press. 2005

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Use with permission of

• Don E. Detmer, MD, MA
• detmer_at_amia.org or detmer_at_virginia.edu