Skip to main content

Table 2 Response results to survey questions

From: The use of personal health information outside the circle of care: consent preferences of patients from an academic health care institution

Question Response Overall
N = 222
Age ≤ 49
N = 38
Age 50–74
N = 132
Age ≥ 75
N = 48
Curative Clinic
N = 197
Palliative Clinic
N = 25
Q1 Your health information is divided into several different sections (e.g. diagnoses test results and images such as x-rays or scans). Would you like to: Share all information 177 (81) 26 (68) 111 (86) 38 (79) 154 (79) 23 (92)
Share no information 12 (5) 4 (11) 4 (3) 3 (6) 12 (6) 0 (0)
Share specific information 30 (14) 8 (21) 14 (11) 7 (15) 28 (14) 2 (8)
No response 3 0 3 0 3 0
Q2 Your biological samples are classified into several different types (e.g. blood urine tissues). Would you like to: Share all information 173 (79) 25 (66) 107 (83) 39 (81) 151 (78) 22 (88)
Share no information 18 (8) 5 (13) 9 (7) 3 (6) 18 (9) 0 (0)
Share specific information 28 (13) 8 (21) 13 (10) 6 (13) 25 (13) 3 (12)
No response 3 0 3 0 3 0
Q3 There are many different areas of medical research (e.g. research on cancer diabetes reproductive disorders genetic disorders heart disease etc.). Would you like to: Share all information 172 (79) 25 (66) 105 (81) 40 (85) 152 (78) 20 (83)
Share no information 9 (4) 2 (5) 5 (4) 1 (2) 9 (5) 0 (0)
Share specific information 37 (17) 11 (29) 19 (15) 6 (13) 33 (17) 4 (17)
No response 4 0 3 1 3 1
Q4 When asked for consent to share your information or samples would you like to have an option to think about the decision and be asked again later? Yes 107 (49) 22 (58) 65 (50) 18 (38) 97 (50) 10 (42)
No 111 (51) 16 (42) 64 (50) 29 (62) 97 (50) 14 (58)
No response 4 0 (0) 3 1 3 1
Q5 Your health information and samples are often requested for future studies. Would you like to: Broad consent 119 (56) 16 (42) 69 (55) 33 (72) 103 (54) 16 (67)
Study-specific consent 80 (38) 19 (50) 49 (39) 11 (24) 74 (39) 6 (25)
Would not share 14 (6) 3 (8) 8 (6) 2 (4) 12 (6) 2 (8)
No response 9 0 6 2 8 1
Q6 A CONTACT POOL may be created with patient names phone numbers and key pieces of health information. UHN Researchers with ethical approval for their studies could search this pool to find participants. Would you prefer to be: Asked for permission 134 (63) 29 (76) 74 (59) 28 (61) 127 (66) 7 (30)
Automatically entered 80 (37) 9 (24) 52 (41) 18 (39) 64 (34) 16 (70)
No response 8 0 6 2 6 2
Q7 How comfortable are you with providing consent for your information or samples to be shared with Researchers within UHN? Very Comfortable 121 (55) 17 (45) 76 (58) 26 (55) 108 (55) 13 (52)
Comfortable 62 (28) 10 (26) 40 (30) 11 (23) 51 (26) 11 (44)
Neutral 30 (14) 6 (16) 14 (11) 10 (21) 29 (15) 1 (4)
Uncomfortable 5 (2) 3 (8) 2 (2) 0 (0) 5 (3) 0 (0)
Very Uncomfortable 3 (1) 2 (5) 0 (0) 0 (0) 3 (2) 0 (0)
No response 1 0 0 1 1 0
Q8 How comfortable are you with providing consent for your information or samples to be shared with Researchers at other hospital-based
research institutes?
Very Comfortable 85 (38) 12 (32) 52 (39) 19 (40) 76 (39) 9 (36)
Comfortable 68 (31) 9 (24) 45 (34) 14 (29) 55 (28) 13 (52)
Neutral 44 (20) 11 (29) 24 (18) 9 (19) 42 (21) 2 (8)
Uncomfortable 17 (8) 3 (8) 10 (8) 3 (6) 16 (8) 1 (4)
Very Uncomfortable 8 (4) 3 (8) 1 (1) 3 (6) 8 (4) 0 (0)
Q9 How comfortable are you with providing consent for your information or samples to be shared with Researchers at universities? Very Comfortable 71 (33) 11 (29) 45 (35) 13 (28) 65 (33) 6 (27)
Comfortable 82 (38) 14 (37) 50 (39) 18 (38) 67 (34) 15 (68)
Neutral 39 (18) 9 (24) 21 (16) 8 (17) 39 (20) 0 (0)
Uncomfortable 18 (8) 1 (3) 11 (9) 6 (13) 18 (9) 0 (0)
Very Uncomfortable 8 (4) 3 (8) 2 (2) 2 (4) 7 (4) 1 (5)
No response 4 0 3 1 1 3
Q10 How comfortable are you with providing consent for your information or samples to be shared with For-profit businesses (e.g. drug or insurance companies such as Pfizer)? Very Comfortable 35 (16) 6 (16) 20 (15) 8 (17) 32 (16) 3 (13)
Comfortable 24 (11) 3 (8) 15 (12) 5 (11) 19 (10) 5 (22)
Neutral 49 (22) 12 (32) 25 (19) 12 (26) 42 (21) 7 (30)
Uncomfortable 51 (23) 7 (18) 33 (25) 11 (23) 44 (22) 7 (30)
Very Uncomfortable 60 (27) 10 (26) 37 (28) 11 (23) 59 (30) 1 (4)
No response 3 0 2 1 1 2
Q11 How comfortable are you with providing consent for your information or samples to be shared with Not-for-profit businesses (e.g. Heart and Stroke Foundation of Canada)? Very Comfortable 64 (29) 9 (24) 41 (32) 12 (26) 60 (31) 4 (16)
Comfortable 61 (28) 6 (16) 36 (28) 19 (40) 46 (24) 15 (60)
Neutral 50 (23) 12 (32) 25 (19) 12 (26) 48 (25) 2 (8)
Uncomfortable 31 (14) 9 (24) 20 (15) 2 (4) 28 (14) 3 (12)
Very Uncomfortable 13 (6) 2 (5) 8 (6) 2 (4) 12 (6) 1 (4)
No response 3 0 2 1 3 0
Q12 How comfortable are you with providing consent for your information or samples to be shared Provincially (i.e. within Ontario)? Very Comfortable 52 (24) 7 (18) 33 (25) 10 (21) 47 (24) 5 (20)
Comfortable 65 (30) 8 (21) 39 (30) 18 (38) 50 (26) 15 (60)
Neutral 58 (26) 14 (37) 34 (26) 10 (21) 56 (29) 2 (8)
Uncomfortable 28 (13) 6 (16) 16 (12) 6 (13) 26 (13) 2 (8)
Very Uncomfortable 16 (7) 3 (8) 8 (6) 3 (6) 15 (8) 1 (4)
No response 3 0 2 1 3 0
Q13 How comfortable are you with providing consent for your information or samples to be shared Nationally (i.e. within Canada)? Very Comfortable 52 (24) 7 (18) 35 (27) 9 (19) 47 (24) 5 (20)
Comfortable 64 (29) 9 (24) 38 (29) 16 (34) 50 (26) 14 (56)
Neutral 57 (26) 13 (34) 33 (25) 11 (23) 54 (28) 3 (12)
Uncomfortable 29 (13) 5 (13) 16 (12) 7 (15) 27 (14) 2 (8)
Very Uncomfortable 17 (8) 4 (11) 8 (6) 4 (9) 16 (8) 1 (4)
No response 3 0 2 1 3 0
Q14 How comfortable are you with providing consent for your information or samples to be shared Internationally (i.e. around the world)? Very Comfortable 44 (20) 7 (18) 28 (22) 8 (17) 40 (21) 4 (16)
Comfortable 41 (19) 7 (18) 26 (20) 8 (17) 30 (15) 11 (44)
Neutral 53 (24) 11 (29) 29 (22) 13 (28) 49 (25) 4 (16)
Uncomfortable 46 (21) 6 (16) 29 (22) 10 (21) 42 (22) 4 (16)
Very Uncomfortable 35 (16) 7 (18) 18 (14) 8 (17) 33 (17) 2 (8)
No response 3 0 2 1 3 0
Q15 Sometimes for-profit companies develop partnerships with UHN and we work together on medical research projects. How comfortable are you consenting to share your information or samples for these projects? Very Comfortable 38 (17) 6 (16) 25 (19) 6 (13) 35 (18) 3 (12)
Comfortable 73 (33) 11 (29) 43 (33) 18 (38) 57 (29) 16 (64)
Neutral 48 (22) 9 (24) 28 (21) 11 (23) 45 (23) 3 (12)
Uncomfortable 33 (15) 6 (16) 18 (14) 8 (17) 30 (15) 3 (12)
Very Uncomfortable 30 (14) 6 (16) 18 (14) 5 (10) 30 (15) 0 (0)
Q16 Sometimes for-profit companies ask UHN for health information or samples. How comfortable are you consenting to share your information or samples with these companies if UHN is not directly involved in their work? Very Comfortable 25 (12) 2 (6) 17 (13) 6 (13) 22 (12) 3 (12)
Comfortable 43 (20) 6 (17) 29 (22) 7 (15) 34 (18) 9 (36)
Neutral 37 (17) 7 (20) 17 (13) 13 (28) 35 (18) 2 (8)
Uncomfortable 53 (25) 10 (29) 34 (26) 9 (20) 43 (23) 10 (40)
Very Uncomfortable 57 (27) 10 (29) 34 (26) 11 (24) 56 (29) 1 (4)
No response 7 3 1 2 7 0
Q17 Sometimes medical research using health information or samples at UHN leads to discoveries that are commercialized and sold for-profit in the future. How do you feel about consenting to share your information or samples being involved in this? Very Comfortable 29 (13) 4 (11) 19 (15) 6 (13) 25 (13) 4 (17)
Comfortable 52 (24) 6 (16) 32 (24) 12 (26) 42 (21) 10 (42)
Neutral 51 (23) 11 (29) 33 (25) 7 (15) 48 (24) 3 (13)
Uncomfortable 47 (21) 8 (21) 25 (19) 14 (30) 41 (21) 6 (25)
Very Uncomfortable 41 (19) 9 (24) 22 (17) 8 (17) 40 (20) 1 (4)
No response 2 0 1 1 1 1
Q18 Would you like to be able to track who is using your information or samples and what they are using it for? Yes 134 (61) 27 (71) 83 (63) 22 (47) 124 (63) 10 (40)
No 77 (35) 7 (18) 45 (34) 24 (51) 63 (32) 14 (56)
Not applicable. I would not share at all 10 (5) 4 (11) 4 (3) 1 (2) 9 (5) 1 (4)
No response 1 0 0 1 1 0
Q19 Would you like to be notified with the results of studies that have used your information or samples? Yes 155 (70) 29 (76) 96 (73) 28 (58) 140 (71) 15 (60)
No 57 (26) 5 (13) 32 (24) 19 (40) 48 (24) 9 (36)
Not applicable. I would not share at all 10 (5) 4 (11) 4 (3) 1 (2) 9 (5) 1 (4)
Q20 If you do want to be notified of study results how would you like to be notified? Online via an electronic patient portal 76 (35) 15 (39) 51 (39) 8 (17) 66 (34) 10 (40)
Online via email 50 (23) 14 (37) 29 (22) 7 (15) 47 (24) 3 (12)
Standard mail 43 (20) 3 (8) 25 (19) 15 (31) 39 (20) 4 (16)
I do NOT want to be notified of study results 40 (18) 4 (11) 20 (15) 15 (31) 34 (17) 6 (24)
Not applicable. I would not share at all 11 (5) 2 (5) 5 (4) 3 (6) 9 (5) 2 (8)
No response 2 0 2 0 2 0
\