“Give Me My Data!’ A Not So Patient Perspective”
Don Juzwishin PhD
Director Health Technology Assessment and Innovation
April 24, 2012
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Objectives
• Identify 4 forces that have empowered patients
• Why they emerged• Why we need to pay
attention to them• What will be policy
and health delivery implications
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Four Forces of Liberation
Knowledge, information, data
are ubiquitous
Individual responsibility for
health & knowledge
Power SymmetryVirtual
Communities
Give Me My Data
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Ubiquity of KID
• Knowledge– Boundary maintenance– Asymmetry– http://www.ncbi.nlm.nih.gov/pubmed/
• Information– CIHI Canadian Hospital Reporting
Project– http://cihi.ca
• Data– Hans Rosling– http://www.gapminder.org/
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Responsibility/Rights
• Dave deBronkart• E-patient Dave• Participatory medicine• Personal health data
rights• http://epatientdave.com/• http://ted.com
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Rights and Responsibility
• Kevin Leonard– Patient Destiny– http://patientdestiny.typepad.com/
• Vaughn Glover– Canadian Association for People-
Centered Health– http://www.capch.ca/
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Power
• Coiera – 4 rules for reinventing health care– Technical systems have social
consequences– Social systems have technical
consequences– We don’t design technology, we
design social technical systems; and
– To understand sociotechnical systems, we must understand how people and technologies interact
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Power
• Alex Jadad– Global Center for e-Health
Innovation– Level the playing field for
disadvantaged groups in society, through the use of information and communication technologies and social networking tools
– http://www.ehealthinnovation.org
• Guenther Eysenbach– Consumer Health Informatics– Apomediation
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http://www.medicine20congress.com/ocs/index.php/med/med2012
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Community
• Benjamin and James Heywood, Jeff Cole– Patientslikeme– Mutual support– http://www.patientslikeme.
com/
• Research Opportunities– Clinical trails
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Alberta Health Services
• Patient Portal– http://www.albertahealthservices.ca/org/
ahs-org-ehr.pdf
• Patient Engagement– http://www.albertahealthservices.ca/
patientengagement.asp
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Concluding remarks
• Implications for the future– For patients– For researchers– For policy makers– For health care
delivery