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“Give Me My Data!’ A Not So Patient Perspective”

Don Juzwishin PhD Director Health Technology Assessment and Innovation April 24, 2012


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

Give Me My Data

Power Symmetry

Virtual Communities 3


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/ 4


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 PeopleCentered 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 7


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 8


http://www.medicine20congress.com/oc s/index.php/med/med2012 9


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/pati entengagement.asp

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Concluding remarks • Implications for the future – For patients – For researchers – For policy makers – For health care delivery

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Give me my data  

By Don Juzwishin

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