“Give Me My Data!’ A Not So
Patient Perspective”
Don Juzwishin PhD
Director Health Technology Assessment and
Innovation
April 24, 2012
2
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
3
Four Forces of Liberation
Knowledge, information, data
are ubiquitous
Individual responsibility for
health & knowledge
Power SymmetryVirtual
Communities
Give Me My Data
4
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/
5
Responsibility/Rights
• Dave deBronkart
• E-patient Dave
• Participatory medicine
• Personal health data
rights
• http://epatientdave.com/
• http://ted.com
6
Rights and Responsibility
• Kevin Leonard
– Patient Destiny
– http://patientdestiny.typepad.com/
• Vaughn Glover
– Canadian Association for People-
Centered Health
– http://www.capch.ca/
7
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
8
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
9
http://www.medicine20congress.com/oc
s/index.php/med/med2012
10
Community
• Benjamin and James
Heywood, Jeff Cole
– Patientslikeme
– Mutual support
– http://www.patientslikeme
.com/
• Research Opportunities
– Clinical trails
11
Alberta Health Services
• Patient Portal
– http://www.albertahealthservices.ca/org/
ahs-org-ehr.pdf
• Patient Engagement
– http://www.albertahealthservices.ca/pati
entengagement.asp
12
Concluding remarks
• Implications for the
future
– For patients
– For researchers
– For policy makers
– For health care
delivery