“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

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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/

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

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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