Patient consent preferences on sharing personal health information during the COVID-19 pandemic: “the more informed we are, the more likely we are to help”

Tosoni, Sarah; Voruganti, Indu; Lajkosz, Katherine; Mustafa, Shahbano; Phillips, Anne; Kim, S. Joseph; Wong, Rebecca K. S.; Willison, Donald; Virtanen, Carl; Heesters, Ann; Liu, Fei-Fei

doi:10.1186/s12910-022-00790-z

Table 3 Results from multivariable ordinal regression models for Q7–Q17

From: Patient consent preferences on sharing personal health information during the COVID-19 pandemic: “the more informed we are, the more likely we are to help”

Question	Covariate	Level	OR	95% CI	p value
Q7: How comfortable are you with providing consent for your information or samples to be shared with Researchers within UHN?	Cohort	Pandemic versus pre-pandemic	8.35	(2.85, 24.42)	0.0001
	Age group	50–74 versus 75+	1.33	(0.54, 3.24)	0.53
	Age group	< 49 versus 75+	0.36	(0.13, 1.03)	0.06
	Sex	Female versus male	0.82	(0.41, 1.67)	0.59
	Treatment phase	Follow-up versus treatment	1.36	(0.64, 2.88)	0.42
	Treatment phase	Pre-treatment versus treatment	0.49	(0.17, 1.42)	0.19
	Education	Post-sec. versus no/incomplete post-sec	1.98	(0.95, 4.13)	0.07
Q8: How comfortable are you with providing consent for your information or samples to be shared with Researchers at other hospital-based research institutes?	Cohort	Pandemic versus pre-pandemic	2.50	(1.49, 4.21)	0.0005
	Age group	50–74 versus 75+	0.87	(0.45, 1.68)	0.68
	Age group	< 49 versus 75+	0.54	(0.23, 1.24)	0.14
	Sex	Female versus male	0.87	(0.53, 1.41)	0.56
	Treatment phase	Follow-up versus treatment	1.55	(0.93, 2.59)	0.10
	Treatment phase	Pre-treatment versus treatment	0.64	(0.29, 1.46)	0.29
	Education	Post-sec. versus no/incomplete post-sec	1.14	(0.67, 1.92)	0.63
Q9: How comfortable are you with providing consent for your information or samples to be shared with Researchers at universities?	Cohort	Pandemic versus pre-pandemic	2.06	(1.23, 3.45)	0.006
	Age group	50–74 versus 75+	0.93	(0.49, 1.77)	0.83
	Age group	< 49 versus 75+	0.93	(0.40, 2.16)	0.86
	Sex	Female versus male	0.67	(0.41, 1.09)	0.11
	Treatment phase	Follow-up versus treatment	0.74	(0.44, 1.23)	0.24
	Treatment phase	Pre-treatment versus treatment	0.53	(0.23, 1.23)	0.14
	Education	Post-sec. Versus no/incomplete post-sec	1.36	(0.81, 2.30)	0.24
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)?	Cohort	Pandemic versus pre-pandemic	1.01	(0.68, 1.50)	0.96
	Age group	50–74 versus 75+	0.68	(0.41, 1.14)	0.15
	Age group	< 49 versus 75+	0.99	(0.50, 1.97)	0.97
	Sex	Female versus male	0.73	(0.49, 1.07)	0.11
	Treatment phase	Follow-up versus treatment	0.62	(0.42, 0.93)	0.019
	Treatment phase	Pre-treatment versus treatment	0.36	(0.16, 0.79)	0.011
	Education	Post-sec. versus no/incomplete post-sec	0.82	(0.53, 1.25)	0.35
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)?	Cohort	Pandemic versus pre-pandemic	1.67	(1.09, 2.55)	0.018
	Age group	50–74 versus 75+	0.51	(0.28, 0.93)	0.027
	Age group	< 49 versus 75+	0.44	(0.20, 0.94)	0.034
	Sex	Female versus male	0.75	(0.49, 1.13)	0.16
	Treatment phase	Follow-up versus treatment	0.89	(0.58, 1.37)	0.59
	Treatment phase	Pre-treatment versus treatment	0.45	(0.21, 0.94)	0.0342
	Education	Post-sec. versus no/incomplete post-sec	0.89	(0.56, 1.41)	0.61
Q12: How comfortable are you with providing consent for your information or samples to be shared Provincially (i.e. within Ontario)?	Cohort	Pandemic versus pre-pandemic	2.01	(1.32, 3.07)	0.0012
	Age group	50–74 versus 75+	0.98	(0.57, 1.69)	0.94
	Age group	< 49 versus 75+	0.71	(0.35, 1.45)	0.34
	Sex	Female versus male	0.82	(0.54, 1.23)	0.34
	Treatment phase	Follow-up versus treatment	0.88	(0.58, 1.35)	0.56
	Treatment phase	Pre-treatment versus treatment	0.69	(0.33, 1.47)	0.34
	Education	Post-sec. versus no/incomplete post-sec	0.84	(0.53, 1.32)	0.44
Q13: How comfortable are you with providing consent for your information or samples to be shared Nationally (i.e. within Canada)?	Cohort	Pandemic versus pre-pandemic	1.66	(1.10, 2.51)	0.0154
	Age group	50–74 versus 75+	1.06	(0.62, 1.81)	0.83
	Age group	< 49 versus 75+	0.87	(0.43, 1.76)	0.69
	Sex	Female versus male	0.75	(0.50, 1.12)	0.16
	Treatment phase	Follow-up versus treatment	0.97	(0.64, 1.47)	0.88
	Treatment phase	Pre-treatment versus treatment	0.55	(0.27, 1.15)	0.11
	Education	Post-sec. versus no/incomplete post-sec	0.84	(0.54, 1.31)	0.44
Q14: How comfortable are you with providing consent for your information or samples to be shared Internationally (i.e. around the world)?	Cohort	Pandemic versus pre-pandemic	1.47	(1.00, 2.16)	0.0494
	Age group	50–74 versus 75+	0.93	(0.56, 1.55)	0.78
	Age group	< 49 versus 75+	1.14	(0.58, 2.26)	0.71
	Sex	Female versus male	0.71	(0.48, 1.03)	0.074
	Treatment phase	Follow-up versus treatment	0.81	(0.54, 1.19)	0.28
	Treatment phase	Pre-treatment versus treatment	0.45	(0.22, 0.94)	0.03
	Education	Post-sec. versus no/incomplete post-sec	1.15	(0.76, 1.74)	0.52
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?	Cohort	Pandemic versus pre-pandemic	2.43	(1.59, 3.72)	< .0001
	Age group	50–74 versus 75+	0.94	(0.54, 1.61)	0.81
	Age group	< 49 versus 75+	0.77	(0.38, 1.57)	0.47
	Sex	Female versus male	0.96	(0.64, 1.44)	0.84
	Treatment phase	Follow-up versus treatment	0.74	(0.48, 1.13)	0.16
	Treatment phase	Pre-treatment versus treatment	0.73	(0.34, 1.56)	0.42
	Education	Post-sec. versus no/incomplete post-sec	1.15	(0.74, 1.79)	0.54
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?	Cohort	Pandemic versus pre-pandemic	1.16	(0.78, 1.71)	0.47
	Age group	50–74 versus 75+	0.90	(0.54, 1.52)	0.71
	Age group	< 49 versus 75+	0.72	(0.35, 1.47)	0.34
	Sex	Female versus male	0.61	(0.41, 0.90)	0.0121
	Treatment phase	Follow-up versus treatment	0.66	(0.44, 0.99)	0.0455
	Treatment phase	Pre-treatment versus treatment	0.43	(0.20, 0.93)	0.0318
	Education	Post-sec. versus no/incomplete post-sec	1.00	(0.65, 1.53)	0.99
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?	Cohort	Pandemic versus pre-pandemic	2.01	(1.36, 2.97)	0.0005
	Age group	50–74 versus 75+	1.21	(0.73, 2.03)	0.46
	Age group	< 49 versus 75+	0.92	(0.46, 1.82)	0.81
	Sex	Female versus male	0.52	(0.35, 0.76)	0.0009
	Treatment phase	Follow-up versus treatment	0.82	(0.55, 1.23)	0.34
	Treatment phase	Pre-treatment versus treatment	0.41	(0.19, 0.87)	0.0197
	Education	Post-sec. versus no/incomplete post-sec	1.36	(0.89, 2.07)	0.15

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