“give me my data!’ a not so patient perspective”
DESCRIPTION
“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 - PowerPoint PPT PresentationTRANSCRIPT
![Page 1: “Give Me My Data!’ A Not So Patient Perspective”](https://reader035.vdocument.in/reader035/viewer/2022062808/56815292550346895dc0b785/html5/thumbnails/1.jpg)
“Give Me My Data!’ A Not So Patient Perspective”
Don Juzwishin PhD
Director Health Technology Assessment and Innovation
April 24, 2012
![Page 2: “Give Me My Data!’ A Not So Patient Perspective”](https://reader035.vdocument.in/reader035/viewer/2022062808/56815292550346895dc0b785/html5/thumbnails/2.jpg)
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
![Page 3: “Give Me My Data!’ A Not So Patient Perspective”](https://reader035.vdocument.in/reader035/viewer/2022062808/56815292550346895dc0b785/html5/thumbnails/3.jpg)
3
Four Forces of Liberation
Knowledge, information, data
are ubiquitous
Individual responsibility for
health & knowledge
Power SymmetryVirtual
Communities
Give Me My Data
![Page 4: “Give Me My Data!’ A Not So Patient Perspective”](https://reader035.vdocument.in/reader035/viewer/2022062808/56815292550346895dc0b785/html5/thumbnails/4.jpg)
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/
![Page 5: “Give Me My Data!’ A Not So Patient Perspective”](https://reader035.vdocument.in/reader035/viewer/2022062808/56815292550346895dc0b785/html5/thumbnails/5.jpg)
5
Responsibility/Rights
• Dave deBronkart• E-patient Dave• Participatory medicine• Personal health data
rights• http://epatientdave.com/• http://ted.com
![Page 6: “Give Me My Data!’ A Not So Patient Perspective”](https://reader035.vdocument.in/reader035/viewer/2022062808/56815292550346895dc0b785/html5/thumbnails/6.jpg)
6
Rights and Responsibility
• Kevin Leonard– Patient Destiny– http://patientdestiny.typepad.com/
• Vaughn Glover– Canadian Association for People-
Centered Health– http://www.capch.ca/
![Page 7: “Give Me My Data!’ A Not So Patient Perspective”](https://reader035.vdocument.in/reader035/viewer/2022062808/56815292550346895dc0b785/html5/thumbnails/7.jpg)
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
![Page 8: “Give Me My Data!’ A Not So Patient Perspective”](https://reader035.vdocument.in/reader035/viewer/2022062808/56815292550346895dc0b785/html5/thumbnails/8.jpg)
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
![Page 9: “Give Me My Data!’ A Not So Patient Perspective”](https://reader035.vdocument.in/reader035/viewer/2022062808/56815292550346895dc0b785/html5/thumbnails/9.jpg)
9
http://www.medicine20congress.com/ocs/index.php/med/med2012
![Page 10: “Give Me My Data!’ A Not So Patient Perspective”](https://reader035.vdocument.in/reader035/viewer/2022062808/56815292550346895dc0b785/html5/thumbnails/10.jpg)
10
Community
• Benjamin and James Heywood, Jeff Cole– Patientslikeme– Mutual support– http://www.patientslikeme.
com/
• Research Opportunities– Clinical trails
![Page 11: “Give Me My Data!’ A Not So Patient Perspective”](https://reader035.vdocument.in/reader035/viewer/2022062808/56815292550346895dc0b785/html5/thumbnails/11.jpg)
11
Alberta Health Services
• Patient Portal– http://www.albertahealthservices.ca/org/
ahs-org-ehr.pdf
• Patient Engagement– http://www.albertahealthservices.ca/
patientengagement.asp
![Page 12: “Give Me My Data!’ A Not So Patient Perspective”](https://reader035.vdocument.in/reader035/viewer/2022062808/56815292550346895dc0b785/html5/thumbnails/12.jpg)
12
Concluding remarks
• Implications for the future– For patients– For researchers– For policy makers– For health care
delivery