E-Health Standards in Practice: Challenges and OpportunitiesChallenges and Opportunities

Jennifer ZelmerChief Executive Officer, IHTSDO

ICEGOV 2009Bogota, November 10-13, 2009

Today’s Tutorial

� Why e-health?� Workshop case: H1N1

� Interoperabilty: key drivers for e-health standards� 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

Information is key to health and health care

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� 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

Health Information for the 21st Century

� Person-oriented� Respectful of privacy and secure� High quality� High quality� Relevant � Inter-operable� Flexible� User-Friendly and accessible

Progress Made But Challenges Remain

� Of adults with health problems surveyed� 1 in 2 had to tell same story to multiple providers� 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

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?� 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.

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� 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more than one site� A medical device is withdrawn� A health region’s boundaries change� You want to be able to select the best IT systems available globally

A Global Challenge

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.

Approaches Vary

� Centralized vs. Decentralized decisions� Organizational arrangements� Funding mechanisms� Funding mechanisms� Engagement of the public� Engagement of clinicians� Etc.

As Do Areas of Focus/Progress

� Focus on administrative tools vs. enabling better care� In clinical applications

� Primary vs. Secondary/Tertiary Care� 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.

Nobody has it all solved ...

... But in many ways we share challenges & a vision

Common Themes Internationally (1)

� Information to enable patient/client care, e.g.� Electronic health records (for professionals and individuals)� Knowledgebases � Knowledgebases � Clinical decision support� Access to care, chronic disease management, and similar

services� Integration with medical devices, telehealth, etc.

Common Themes Internationally (2)

� Increasing use of information and communications technologies by patients/clients� To find information about health and health care� 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

Common Themes Internationally (3)

� Health system uses of information also matter, e.g.� Quality improvement & health policy� Accountability

• Research• Public health� Accountability

� 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

• Public health

“In the highly interconnected and readily traversed ‘global village’ of

A problem shared is a problem halved

22/04/201017

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

Workshop Case #1: H1N1

????

Information Challenges for Policy Makers: Selected Examples� How widespread is H1N1 in my jurisdiction?

� Who is most at risk?� How severe are cases?� How severe are cases?

� How is my health system coping with cases?� Who needs to be vaccinated?

� How do I reach them?

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

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?� 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?

The Results ...

Information enabling change ...

... with interoperability a key

HealthInformation

Applied Use Cases

Priv

acy,

Con

fiden

tialit

y an

d S

ecur

ity

Thinking About E-HealthG

over

nanc

e

Applied Use Cases

Data & Tools

Standards

Infrastructure

Priv

acy,

Con

fiden

tialit

y an

d S

ecur

ity

Source: Adapted from Canadian Institute for Health Information

Gov

erna

nce

Capture once, use many times (in a privacy sensitive manner)� For direct client/patient care

� At the point of care� By the client/patient� By the client/patient� Same provider, different time� Different provider(s)

Capture once, use many times (in a privacy sensitive manner)� For direct client/patient care� For public health surveillance� For health outcomes analysis� 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 ...

Without Standards…

Standards-based Interoperability

STANDARDS

Workshop Case #2: Paying for Care

????

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. 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

Discussion Questions

� What was the first field on your form?� How did you identify the patient?� How did you identify the doctor?� 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?

Two (of many) Possible Scenarios

� Physician ID (numeric, 9 digits)

� Patient ID (alphanumeric,

� Patient name (free text, 60 char)

� Patient address� Patient ID (alphanumeric, 12 digits)

� Date of consult (YYYYMMDD)

� Reason for visit (SNOMED encoded term for main problem)

� Patient address� Physician name (free text,

60 char)� Date of consultation

(DDMMMYYYY)� Reason for visit (free text,

200 char)

E-Health Standards in Use Today

Different Types of e-Health Standards

Governance &organizational

Privacy, confidentiality,Technical (e.g.for devices)

Privacy, confidentiality,Security, & access

Information architecture, Models, & structures

Identifiers

Informationexchange

Content

for devices)

Standards Can Exist at Different Levels within these Broad Domains

GroupingGrouping

Classification

Terminology

Another view: Interoperability & standards levels

� Machine Transportability Communication� Agreed communication interfaces

� Machine Readability Accessing info� Technology based, � Operational workflows focused

� Machine interpretability Connecting systemsEngagement � 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

A Wide Range of Relevant Organisations

� WONCA

� OpenEHR

� ICH MedDRA� DICOM

� WHO

� LOINC

� IUPAC

� ICN

� OHT

� IHTSDO

� CDISC

� ISO TC 215/CEN TC 251� HL7

� IEEE

� Continua

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 � 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

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Terminology: SNOMED CT as an Example

� Systematized Nomenclature of Medicine Clinical Terms (SNOMED CT®)

� A comprehensive clinical terminology covering diseases, clinical � 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

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� ...

Enabling decision support: An Example

� Influenza vaccination reminder

� decision support program criterion:� decision support program criterion:� chronic cardiorespiratory disorders

� patient record:� mild persistent asthma

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Using Standards in Practice

Selected Examples

Use in Clinical Environments

� For capture, exchange, and use of clinical information� Primary care� Specialist care

”Standards

Inside”� Specialist care� Tertiary care� Health systems

Inside”

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� Use usually transparent to user but intendedto facilitate interoperability, data exchange,and decision support

Use in Public Health, e.g.

� Public health reporting (e.g. Notifiable diseases)� Biosurveillance� Track and analyze information about vaccinations, public health � Track and analyze information about vaccinations, public health

investigations, etc.� Cancer registries� Enabling research to understand factors that influence health� Etc.

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, � Requires standards for data capture, information exchange, identifiers, analysis, and more

The Challenge – and Opportunity – Ahead

Thinking about a standards process for ehealth …� Diverse standard users and use cases

� Current and future� Importance of balance� 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

The Journey Ahead ...

www.ihtsdo.org

How do we make it easier to use ehealth and ehealth standards than not to?