1. E-Health Standards in Practice:
Challenges and Opportunities
Jennifer Zelmer
Chief Executive Officer, IHTSDO
ICEGOV 2009
Bogota, November 10-13, 2009

2. Today’s Tutorial
Why e-health?
Workshop case: H1N1
Interoperabilty: key drivers for e-health standards
Workshop case: reimbursement for physician consult
Major types of e-health standards in use today
Examples of standards in practice
Lessons learned and key considerations

3. Information is key to health and health care

4. Complexity of the real world of health care
The major reality of health and health care is driven by biological
variability and human systems
Biological variability is hugely diverse, dynamic, and uncontrolled
emerging infections (e.g. HIV, H1N1)
cancer
Human response to disease, scientific knowledge, and technology
are also explosive in their rates of change

5. Health Information for the 21st Century
Person-oriented
Respectful of privacy and secure
High quality
Relevant
Inter-operable
Flexible
User-Friendly and accessible

6. Progress Made But Challenges Remain
Of adults with health problems surveyed
1 in 2 had to tell same story to multiple providers
1 in 5 sent for duplicate tests by multiple providers
1 in 5 reported that records/tests didn’t reach office in time for
appointment
Source: Commonwealth Fund Survey

7. Just some of the challenges ...
What is the patient’s problem list?
Is a new drug safe to prescribe?
What are the latest test results?
Is recommended preventive care due?
How long are patients waiting?
Can I learn from others about how to improve care?
How can we pay health care providers fairly and efficiently?
How can we track resources and outcomes in a health system?
etc.

8. What happens when ...
You move, you travel ... and you still need healthcare
A friend has a life-threatening allergy
A family member’s doctor retires
Clinicians in your hospital trained somewhere else or practice in
more than one site
A medical device is withdrawn
A health region’s boundaries change
You want to be able to select the best IT systems available globally

9. A Global Challenge

10. Shared Goals: Real & Lasting Change
Safe, effective, and responsive health services
Appropriate information sharing between providers
and with patients/clients
Better chronic disease management and public
health surveillance
Help clinicians and patients make better decisions
Engaging patients
Reducing duplication and other inefficiencies
etc.

11. Approaches Vary
Centralized vs. Decentralized decisions
Organizational arrangements
Funding mechanisms
Engagement of the public
Engagement of clinicians
Etc.

12. As Do Areas of Focus/Progress
Focus on administrative tools vs. enabling better care
In clinical applications
Primary vs. Secondary/Tertiary Care
Degree of specialized systems (e.g. outbreak management or e-
prescribing) vs. integrated solutions
Extent of focus on telehealth, public health surveillance, etc.
The challenge of renewal of legacy systems
Engagement of, and support for, patients and citizens
Quality improvement & accountability
Etc.

13. Nobody has it all solved ...
... But in many ways we share challenges & a vision

14. Common Themes Internationally (1)
Information to enable patient/client care, e.g.
Electronic health records (for professionals and individuals)
Knowledgebases
Clinical decision support
Access to care, chronic disease management, and similar
services
Integration with medical devices, telehealth, etc.

15. Common Themes Internationally (2)
Increasing use of information and communications technologies by
patients/clients
To find information about health and health care
To monitor health using medical devices
To choose health care options and schedule appointments
To communicate with health professionals
To access and contribute to a personal health record
etc.
Ensuring privacy, confidentiality, and security

16. Common Themes Internationally (3)
Health system uses of information also matter, e.g.
Quality improvement & health policy • Research
Accountability • Public health
Funding
Increasing the flexibility, integration, and use of information
Growing international cooperation in health information
Standards, systems, best practices, policies, etc.
Building capacity – people, infrastructure, etc.
Focus on benefits evaluation & best practices

17. A problem shared is a problem halved
“In the highly interconnected and
readily traversed ‘global village’ of
our time, one nation’s problem soon
becomes every nation’s problem”
Source: Smolinski et al (2003) Microbial Threats to Health :
Emergence, Detection and Response
17 22/04/2010

18. Workshop Case #1: H1N1
?

19. Information Challenges for Policy Makers:
Selected Examples
How widespread is H1N1 in my jurisdiction?
Who is most at risk?
How severe are cases?
How is my health system coping with cases?
Who needs to be vaccinated?
How do I reach them?

20. New Ways of Monitoring Outbreaks
Model estimates for the mid-Atlantic region (black) vs.CDC-
reported ILI percentages (red)
J Source: Ginsberg et al. Nature 000, 1-3 (2008) doi:10.1038/nature07634

21. The Question of Vaccination: A Case Study
Have there been cases of H1N1 in your country?
Has your country begun or planned H1N1 vaccination?
Is priority being given to certain groups in the population?
Can your country systematically identify everyone under age 65 who
has diabetes or asthma [...]?
Can you contact them?

22. The Results ...

23. Information enabling change ...
... with interoperability a key

24. Thinking About E-Health
Health
Privacy, Confidentiality and Security
Information
Governance
Applied Use Cases
Data & Tools
Standards
Infrastructure
Source: Adapted from Canadian Institute for Health Information

25. Capture once, use many times
(in a privacy sensitive manner)
For direct client/patient care
At the point of care
By the client/patient
Same provider, different time
Different provider(s)

26. Capture once, use many times
(in a privacy sensitive manner)
For direct client/patient care
For public health surveillance
For health outcomes analysis
For informing health policy
For accountability and public reporting
For costing and funding
For clinical research
For health services research
For ...

27. Without Standards…

28. Standards-based Interoperability
STANDARDS

29. Workshop Case #2: Paying for Care
?

30. The scenario
John Smith visits his doctor because he has a bad eye infection. His
doctor is entitled to bill the insurance plan for the consultation at a
standard rate.
To process payment, the insurance company needs to know
which patient was cared for
when
by whom
for what
Create a form that would capture this information

31. Discussion Questions
What was the first field on your form?
How did you identify the patient?
How did you identify the doctor?
What form did you use for the date? Did you include the consultation
time?
How did you describe the reason for visit?

32. Two (of many) Possible Scenarios
Physician ID (numeric, 9 Patient name (free text, 60
digits) char)
Patient ID (alphanumeric, Patient address
12 digits) Physician name (free text,
Date of consult 60 char)
(YYYYMMDD) Date of consultation
Reason for visit (SNOMED (DDMMMYYYY)
encoded term for main Reason for visit (free text,
problem) 200 char)

33. E-Health Standards in Use Today

34. Different Types of e-Health Standards
Governance &
organizational
Technical (e.g.
Privacy, confidentiality,
for devices)
Security, & access
Information Information architecture,
exchange Models, & structures
Content Identifiers

35. Standards Can Exist at Different Levels
within these Broad Domains
Grouping
Classification
Terminology

36. Another view: Interoperability & standards levels
Machine Transportability Communication
Agreed communication interfaces
Machine Readability Accessing info
Technology based,
Operational workflows focused
Machine interpretability Connecting systems
Engagement
Clinician,
Secondary data users
Technology implementers
Regional Connectivity & EHR.
Agreed structure and meaning
Co-operability Connecting people
Clinician Driven leading to agreed process, eg care planning
Policy driven
Source: MOHHoldings, Singapore

37. A Wide Range of Relevant Organisations
OpenEHR
DICOM
WONCA ICH MedDRA
ICN
IEEE
LOINC
IHTSDO
Continua
CDISC
OHT
ISO TC 215/
IUPAC HL7 CEN TC 251
WHO

38. The Vision for IHTSDO
To enhance the health of human-kind by facilitating better health
information management
To contribute to improved delivery of care by clinical and social care
professions
To facilitate the accurate sharing of clinical and related health
information, and the semantic interoperability of health records
Member-driven organization, pooling resources for shared benefit
38

39. Terminology: SNOMED CT as an Example
Systematized Nomenclature of Medicine Clinical Terms (SNOMED
CT®)
A comprehensive clinical terminology covering diseases, clinical
findings, and procedures
Represents the meaning of concepts using formal definitions
Language independent
> 315,000 active concepts, ~ 806,000 descriptions, ~ 1M
defining relationships in international release
Helps to structure and computerize health records allowing for a
consistent way of indexing, storing, retrieving and aggregating
clinical data

40. To a clinician, these are related. But what
about to a computer?
Myocardial infarction
Myocardial infarct
MI
AMI
Heart attack
Infarction of heart
Cardiac infarction
...

41. Enabling decision support: An Example
Influenza vaccination reminder
decision support program criterion:
chronic cardiorespiratory disorders
patient record:
mild persistent asthma
41

42. Using Standards in Practice
Selected Examples

43. Use in Clinical Environments
For capture, exchange, and use of clinical information
Primary care
”Standards
Specialist care Inside”
Tertiary care
Health systems

45. Use by Patients and Families
For example for use in personal health history application and in
personal health records
Use usually transparent to user but intended
to facilitate interoperability, data exchange,
and decision support

47. Use in Public Health, e.g.
Public health reporting (e.g. Notifiable diseases)
Biosurveillance
Track and analyze information about vaccinations, public health
investigations, etc.
Cancer registries
Enabling research to understand factors that influence health
Etc.

48. Use in Support of Public Policy
Frequently need to combine information from many different sources
to track trends or compare results using health indicators
Requires standards for data capture, information exchange,
identifiers, analysis, and more

49. The Challenge – and Opportunity – Ahead

50. Thinking about a standards process for
ehealth …
Diverse standard users and use cases
Current and future
Importance of balance
What about governance?
Establishing criteria and mechanisms for consultation/consensus-
building
How to ensure quality and sustainability of the process?
Links with related activities in other jurisdictions & industries
Facilitating adoption of standards – what are the levers?
Compliance testing – opportunities and challenges
Implications for implementation and evaluation

51. The Journey Ahead ...
www.ihtsdo.org
How do we make it easier to use ehealth and ehealth standards than not to?