“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