STEPPS towards Personalized Internet Health Information

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STEPPS towards Personalized Internet Health
Information

• Persephone Doupi, Johan van der Lei,
• AM van Ginneken, E van Mulligen,
• L Taal, H Boxma

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Overview

• Patient education the Internet
• Background to STEPPS
• System architecture description
• Project update
• Implementation considerations

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Technological Developments

• ICT healthcare applications
• Electronic Medical Records
• Internet
• Connectivity
• Access to information
• Communication channel
• to healthcare professionals
• to other patients

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PATIENT EDUCATIONThe way to knowledge

• Ideally a standard clinical duty
• In practice PROBLEMATIC

• Communication problems

• Time constraints

• Inadequate attention

NEED FOR BETTER SOLUTIONS
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The role of the Internet

• Wealth of medical health resources
• (journals, academic, research hospital
  sites,etc.)
• Traits suitable for patient education
• (just-in-time info availability)
• Access to complementary resources (dictionaries,
  glossaries, etc.)
• Fast efficient communication medium

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INTERNET the limitations

• 1. NAVIGATION to relevant information
• How do you find what you need?
• 2. QUALITY of information
• How can you trust what you do find?

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Core Idea

• Integration of EMR and online health
• information and knowledge resources

• APPLICATION OPTIONS
• Specialists
• General practitioners
• Laymen (patients, family members)

• Laymen (patients, family members)

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The STEPPS project
Personalized
Evaluated
Patient
STructured
Support

• Personalizing Internet health information
• for post-discharge support of burn patients

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STEPPS Background

• Burn patients

• need lot of support after discharge

• need tailored education programs

• face known problems

• often receive inadequate conflicting info

• live away from place of hospitalization

• Internet

• abundant information

• accessible anytime, anywhere

• already widely in use

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STEPPSProposed solutions

• NAVIGATION to relevant information
• QUALITY of information

EMR as starting point for relevant retrieval
Clinicians as knowledgeable intermediaries
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STEPPS Graphical Overview
Clinician Review
Patient Profile
Structured Data Entry input
Case summary
Query Formulator
Search
Indexing
WorldWide Web
Personalized Patient Information
Catalogues
Site collection
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Technical aspects

• COMBINE EXISTING TECHNOLOGIES
• Electronic medical record systems
• Terminology systems
• Indexing matching software
• ACHIEVE NEW FUNCTIONALITY

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The role of the EMR

• Contains
• Health problems of specific person
• Clinical data

Sources of information needs
Determinants of information relevance
IDEAL STARTING POINT FOR INFORMATION RETRIEVAL
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STEPPS Phase A
UMLS coding
XML file
Patient Profile
Structured Data Entry input
Case summary
Query Formulator

• Burn care interface for structured data
  collection
• Projection to UMLS terms
• Extraction of patient profile

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Phase A Patient data

• Structured Data Entry burn care module
• Standardized flexible interface
• Adapted to NBIS data set
• (product of consensus)
• Bilingual (Dutch English)
• Data entry Goal of 60 cases
• in Beverwijk (15 cases)
• in Rotterdam (first 5)
• Pending Groningen

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Phase A Role of the UMLS

• FUNCTION
• Link between EMR Internet resources
• APPROACH
• UMLS codes in SDE interface
• Indexing of Internet pages by Collexis
• (use as indexing vocabulary)

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Phase A UMLS projection

• Total number of thesaurus entries 600
• ( approx. 200 more for ICECI)
• Matched (IKA software) 80
• Further manual analysis required
• (in progress)
• Exact matches
• Approximate matches
• More specific More general
• Failure to match (reasons)

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Phase A Patient profile

• Definition
• Mix of general specific characteristics
• (demographics, accident data, hospitalization
  data etc.)
• Extraction
• UMLS codes assigned to SDE model terms
• All coded and present terms
• extracted as an XML file sent to Collexis

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STEPPS Phase B
Query Formulator (Collexis)
Search
Indexing
WorldWide Web
(Collexis)
Catalogues
Site collection

• Collection of Web pages

Indexing

• CATALOGUES
• Matching against patient profile

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Phase B Internet Resources

• Meta-search tools (Copernic CopernicPro)
• Search on predefined topics
• Burns thermal injury
• Wound management
• Scar prevention management
• Pain management
• Physiotherapy
• Psychological disorders (PTSS, depression etc.)
• Storage locally creation of catalogues
• further experimentation (off-line)

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Quality of Internet health information

• General consensus on criteria
• (authorship, currency, usability, accuracy
  etc.)
• Several implementation efforts

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Quality of Internet information the missing link
Accuracy assessment

• Debatable

• Time consuming

• Costly

• Central factor for system adoption

Health professionals as knowledgeable
intermediaries
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STEPPS Phase C
Clinician Review
Patient Profile
XML file
Personalized Patient Information
Query Formulator
Catalogues
(Collexis)

• RETRIEVAL OF TAILORED MATERIAL
• Evaluation by clinician reviewers

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Phase C Evaluation goals

• Clinicians views on
• Internet health content
• Degree of agreement amongst them
• Differences among professional groups
• Contrast against patients viewpoint

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Implementation aspects

• Standardization of communication,
• structure and content of EMRs
• System network security
• Medical data ownership
• Patient privacy confidentiality
• Impact on clinical practices
• Impact on patient-physician relationship

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Implications for STEPPS

• Current goal Focus on BCU team
• Integrate patient education with
• routine clinical practice
• Primary users and use of clinical data
• Burn care Intranet under way
• Future scenarios
• General practitioners
• Patients and family members

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Acknowledgements

• Dutch Burns Foundation
• Greek State Scholarships Foundation

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Thank you!
Contact information E-mail doupi_at_mi.fgg.eur.nl
http//www.eur.nl/fgg/mi/ Website of MI-EUR
http//www.brandwonden.nl/ Website of the Dutch
Burns Foundation