Personalized Disease Management - Thyroid Cancer - Knowledge Management - Sunil Nair Health...

Personalized Disease Management: Hope for Thyroid Cancer Survivors.

Sunil NairDalhousie University Health InformaticsHINF6230March 26, 2008

05/03/23 HINF6230-KMPaper-ThyroidCancer-Sunil

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Thyroid Cancer

Adapted from Oncology Interactive Education SeriesDTC


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“Thyroid Cancer is the most rapidly increasing cancer

among Canadians” Males - 4.9% per year 1994-2003;

Females - 10.4% per year since 1997

Annual Rate of Increase - >5%

Highest 5-yr Relative Survival Rate(RSR)- 96%

Recurrence Rate – up to 20%

“Cancer Care Ontario: Cancer in Young Adults in Canada, Canada, 2006.”“National Cancer Institute of Canada: Canadian Cancer Statistics 2007.”


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Why is Thyroid Cancer Important Improved detection – Early Diagnosis Effective Modern Treatment Mortality rate very low High chance of recurrence

Increasing number of young cancer survivors who need lifelong care & support.


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Thyroid Cancer Care Algorithm


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DTC- Long-Term Disease Management Chronic Disease Management

“a multi-disciplinary, continuum based approach that proactively addresses the patient and physician relationship and the preventive measures and evidence-based practice guidelines required to alter the natural course of the disease and improve overall health.” -Disease management Association of America

Accurate Surveillance and Maintenance to check for possible recurrences

Follow-up (F/U) - Testing for Tg and WBS; F/U is lifelong (more than 30 yrs) F/U treatment is different for patients with low, intermediate

and high risk. F/U is done mainly at the primary care.


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Knowledge support needed for Thyroid Cancer survivors in long-term follow

up – patient empowerment and Self Management.

The Primary Care Practitioner at point of care for decision support


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Barriers to Effective Long-term Thyroid Cancer Management

Primary Care Providers unable to follow Practice Guidelines

Difficulties with active follow-up Lack of care planning and coordination Patients not informed about their disease


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Long-term Thyroid Cancer Management Patient Empowerment

“an individual being an active member of his/her disease management team”

Patient-centered Care Disease specific Patient education


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Chronic Care Model (Wagner et al. 1999)

Thyroid Cancer Survivors CommunityResources

Health System

Self ManagementSupport Delivery

SystemSupport

Decision Support

Critical InformationSupport

Informed ActivatedPatient

Prepared, ProactivePractice team

ProductiveInteractions

Functional & Clinical outcomes


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Decision Support at point-of-care Access to EMR Computerized CPG CPOE Alerts & Reminders Computerization of Referral, Scheduling and Clinical results interpretation


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How can KM Applications help Interactive Health Communication

Applications (IHCAs) Developing Machine readable CPG, CP Decision Aids Semantic Web Web 2.0


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Interactive Health Communication Applications (IHCAs) “The interaction of patient-provider via Information

technology device to access and transmit health information and receive guidance and support on health related issue.”


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Developing Machine readable CPG Several Modeling

methodologies exists GEM, GLIF, EON,

Protégé etc. XML used in

implementation of CPG adds specific

structure to text for content retrieving and presentation


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Challenges of Computerized CPG Adaptation

Non-Interoperable Collaboration tools and systems

Undefined data sharing policy and standards Information tailoring to specific user needs Inadequate Infrastructure Expensive


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Decision Aids in Cancer Patients Participation

in decision making Encourages patient-

centered clinical model

Reduce patients uncertainty

Increase patients knowledge

Realistic expectations of outcomes


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Challenges in Decision Aids

Content Description Priorities vary Content Categorization Simplifying Complex Information

Presentation format Video, text, Notebook or Online

Incorporating in to practice Evaluation

Understanding Risks


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Application of Semantic Web

Community ofThyroid

CancerSurvivors

Population ofExperts inThyroid cancer;Care providers;Specialists

Social NetworksBlogs, Discussionforums, groups, Websites

Thyroid cancerSurvivorInformation System

Data ClusteredBy text, tags &Metadata

RecommendationEngine

SearchEngine


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Semantic Web of Healthcare Knowledge Adaptive Patient-

Specific Healthcare plans

Adapted from “Adaptable Personalized Care Planning via a Semantic Web Framework” – SSR Abidi & H Chen


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Semantic Web Translation Limitations New and evolving technology

Gaps in Standardization & Implementation

Unavailability of Semantically annotated information source

Slow Performance of RDF, OWL

Lack of Standardized rule language

Cross community interactions


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Future direction Personalized Patient focused Programs

To benefit participants with lower self efficacy and health related quality of life

Efficient Decision Support technologies Generating customized Content System independency

A large number of Cancer Survivors, require repeated active treatment and have continuing need for cancer care

resources and support services.“National Cancer Institute of Canada: Canadian Cancer Statistics 2007.”


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Acknowledgement

Dr. Murali RajaramanAssistant ProfessorDepartment of Radiation OncologyDalhousie University, CDHA


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Thank you!

Personalized Disease Management - Thyroid Cancer - Knowledge Management - Sunil Nair Health...

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