1. 2010 Public Opinion Research: A Nation-Wide Study of Attitudes Towards Electronic Health Records and Health System Use of Patient Information This study was commissioned by the Canadian Institute for Health Information (CIHI) and Canada Health Infoway. March 2010

2. Background This nation-wide survey was conducted via telephone between February 25 th and March 8 th 2010 1,000 adult Canadian were selected on a random probability basis to be interviewed Results from this survey can be considered accurate within a margin of error of +/- 3.1% The survey was conducted to: – Obtain baseline measures of key attitudes towards EHR and HSU which can be tracked, over time – Quantify opinion to these issues, observed in an earlier phase of qualitative research

3. Top Problem Facing The Health Care System Q: “What would you say is the most important issue facing the health care system today?

4. Reported State of Personal Health Care Records High Categories for Difficult to Access Post-Grad (34%) Quebec (30%) $100k+ (29%) 25-34 Yrs (28%) Q: How would you describe the state of your health records… 22%

5. Impact of Health Records on the Kind of Care Received High Categories for Negative Responses Post-Grad (20%) $80k+ (20%) Quebec (19%) Females (17%) Q: Would you say that the way your health care records are maintained has a … impact on the kind of care you receive?… 14%

6. Impact of Health Records on the Health Care System High Categories for Big Problem Post-Grad (40%) Quebec (40%) 55 Yrs+ (39%) $80-$100k (38%) Q: Would you say that the way personal health records are maintained is…for the health care system 31%

7. Relation Between Perceived State of Health Care Records and Quality of Care and System Impacts All in one place and very easy to access Mostly in one place and fairly easy to access In a number of places and fairly difficult to access All over then place and very difficult to access Impact on Personal care Positive72%62%17%18% None23%27%36%26% Negative1%7%40%52% Impact on System Very big/Big problem20%26%51%63% Small/No Problem71%65%44%35%

8. Recognition that Canada has a Goal and a Plan to Convert All Personal Health Records from a Paper Format to an Electronic Format Lower Recognition 18-34 Yrs (28%) Alberta (31%) B.C. (35%) High Recognition Post Grad (61%) 45-54 Yrs (56%) Ontario. (55%) Quebec (54%) Q: Do we have a goal and a plan to convert all personal health care records in Canada from a paper to an electronic format? 18%

9. Reaction to the Idea of Converting All Personal Health Records from a Paper Format to an Electronic Format High Categories – Good idea $60k+ (83%) Families (83%) Quebec (82%) 25-34 Yrs (80%) Atlantic (80%) Employed (80%) Q: On balance, do you think converting personal health records from a paper to an electronic format is… High Categories – Bad idea Unemployed (33%) Homemakers (27%) 18-24 Yrs (27%) Alberta (27%) Under $40k (26%) Less than HS (26%)

10. Concerns About Electronic Health Care Records Q: “Is there anything about having your health car records in an electronic format that would concern you? High Categories – Concern Unemployed (77%) Alberta (73%) 35-44 Yrs (69%) Ontario (66%)

11. Reported Use of Electronic Record in Principal Doctor’s Office Low Categories – No Quebec (61%) $40k-$60k (50%) Student (49%) High Categories - Yes Alberta (55%) Homemaker (49%) Ontario (44%) 55+ (43%) Q. Does your principal doctor or care provider use an electronic record in their office?

12. Impact of Principal Care Giver Having EMR on Patient’s View that EHRs are a Good Idea or a Bad Idea Have EMRDon’t have EMR EHR’s are… Good idea78%73% Bad idea17%22%

13. Knowledge of Current Use of Personal Health Information for Other than Direct Patient Use High Categories - Yes Quebec (26%) Homemaker (22%) Q: As far as you know, is personal health information used for any purpose other than by your health provider in giving care to an individual patient?

14. Can Electronic Records be Used in Different or More Ways than a Paper Record ? High Categories - Yes $100k (81%) Post-Grad (79%) 25-34 Yrs (76%) Unemployed (76%) Student (75%) Q: Do you think that personal health information could be used in different or more ways if it was stored as an electronic record, compared to a paper record?

15. Reported Recall of the Term “Health System” or “Secondary Use” of Patient Information High Categories - Yes Quebec (47%) 55-64 Yrs (42%) $80k + (41%) Q: Have you ever heard of Health System or Secondary Use of Patient Health Information?

16. Perceived Impacts of HSU of information on Patient Care and the Operation and Quality of Health Care in Canada Q: Does Health System or Secondary Use of patient health information strike you as something that is going to have a … impact on the operation and quality of health care/the kind of care you might receive?

17. Perceived Impact of Various HSU of Data on Health Care in Canada…Front line Health Care Q: What sort of impact would the following use of information for HSUs have on health care in Canada…Improving front line health care

18. Perceived Impact of Various HSU of Data on Health Care in Canada… Efficiency and Effectiveness of Health Care Delivery Q: What sort of impact would the following use of information for HSUs have on health care in Canada… Improving efficiency and effectiveness of health care delivery

19. Perceived Impact of Various HSU of Data on Health Care in Canada… Tracking Public Health Q: What sort of impact would the following use of information for HSUs have on health care in Canada… Tracking the health of the general population

20. Perceived Impact of Various HSU of Data on Health Care in Canada… Medical and Health Research Q: What sort of impact would the following use of information for HSUs have on health care in Canada… Strengthening Medical and Health Research

21. Perceived Impact of Various HSU of Data on Health Care in Canada… Percent of Very Positive Reponses Q: What sort of impact would the following use of information for HSUs have on health care in Canada

22. Reported Levels of Concern About Individual Information Being Used for HSU Purposes Q: How concerned would you be about your health information being used for these types of HSUs High Concern Unemployed (62%) Females (55%) 25-34 Yrs (55%) Low Concern 100k+ (32%) 18-24 (35%) Man/Sask (38%)

23. Reported Levels of Concern if Information was De-identified Q: If your health information was de-identified, how concerned would you be about it being used for HS purposes? High Concern Under $40k (41%) BC (40%) High School (40%) Low Concern $80k (21%) Post Grad (23%) 25-44 Yrs (25%)

24. Comfort with Sharing De-identified Information with Various Organizations – Provincial Department of Health Q: How would you feel about sharing your de-identified information with the following organization…

25. Comfort with Sharing De-identified Information with Various Organizations – Other Health Care Organizations Q: How would you feel about sharing your de-identified information with the following organization…

26. Comfort with Sharing De-identified Information with Various Organizations – Research Organizations Q: How would you feel about sharing your de-identified information with the following organization…

27. Comfort with Sharing De-identified Information with Various Organizations – Statistical Organizations Q: How would you feel about sharing your de-identified information with the following organization…

28. Comfort with Sharing De-identified Information with Various Organizations – Private Organizations Q: How would you feel about sharing your de-identified information with the following organization…

29. Comfort with Sharing De-identified Information with Various Organizations – ( Net Scores -- Comfortable Minus Uncomfortable) Q: How would you feel about sharing your de-identified information with the following organization…

30. Control of Decision to Share Information – Perceived and Preferred Q: Does Health System or Secondary Use of patient health information strike you as something that is going to have a … impact on the operation and quality of health care/the kind of care you might receive?

31. Comfort with Use of Identified Information Q: How comfortable would you feel if your information was identified and contained your name and address? High Concern Female (62%) Post-Grad (60%) Retired (59%) $60k-$80k (59%) B.C. (58%)

32. Comparison of Comfort/Concern about the General Concept of HSU vs De-Identified vs Identified Uses

33. Level of Demand for Consent in Cases Where Identified Information was Used Q: How would you feel about a requirement that your personal approval or consent would have to be given before de-identified information was used? High Consent Required Post-Grad (81%) $80k-$100k (79%) Female (74%) 55-64 Yrs (73%)

34. Reported Likelihood of Granting or Withholding Consent, if Required for Identified Use Q: If your approval or consent was required… Do you think you would or would not give your approval or consent?

35. Likelihood of Granting Consent Based on Likelihood of Insisting on Consent Insist on Consent (67%) Prefer Consent (22%) Wouldn’t care (9%) Would grant (69%) 64%77%81% Would not grant (21%) 22%15%18% Don’t Know (11%) 13%7%1%

36. Reaction to the idea of an Independent Oversight Body to Approve Identified Use Insist on Consent (67%) Prefer Consent (22%) Wouldn’t care (9%) Oversight adds comfort (65%) 67%40%39% Makes no difference (33%) 31%55%57% Q: Would you be more comfortable if you knew that use of identified information would be reviewed and approved?

37. The Size of Hard Resistance to HSU

38. Expectation that Personal Doctor would Notify Patient when Information was used for HS Purposes Q: Would you expect your doctor or care giver to notify you about when and how your information was being used?

39. Privacy Vs HSU – Which is Most Important? High Privacy Living alone (48%) Female (45%) Under $40k (45%) High School (45%) 45-64 Yrs (45%) High HSU $80k+ (63%) 35-44 Yrs (61%) 18-24 Yrs (59%) Q: What is more important to you: Protecting the privacy of your health information or being able to use it for HSU?