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

“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

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

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  1. “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

  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/ocs/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/patientengagement.asp

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

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