Requesting a unique personal identifier or providing a souvenir incentive did not affect overall consent to health record linkage: evidence from an RCT nested within a cohort

Abstract

Requesting a unique personal identifier or providing a souvenir incentive did not affect overall consent to health record linkage.

A systematic literature review of health consumer attitudes towards secondary use and sharing of health administrative and clinical trial data: a focus on privacy, trust, and transparency

“…• Low levels of trust resulted in less willingness to share data with researchers from both not-for-profit and for-profit companies. 0.9 [ 22 ], Hong Kong, not reported RCT nested within a cohort, chi-square test, multivariable logistic regression, likelihood ratio test General medical/subsample of the FAMILY cohort 1200 Age, years 94 (7.8), 18–29 197 (16.4), 30–44 423 (35.3), 45–59 307 (25.6), 60–74 179 (14.9), ≥75 Education 436 (36.3), primary 587 (48.9), secondary 177 (14.8), tertiary Sex, male 456 (38) Privacy Privacy • Requesting HKID significantly reduced consent for data linkage among adults aged 18–44 years (9.9%) compared to other age groups reflecting privacy concerns. • 60–74 years were most likely to agree to data linkage (40.7%).…”

“…Other designs included surveys [ 16 – 21 , 23 – 29 , 35 , 39 , 41 , 44 ] and combinations of deliberative sessions with surveys [ 15 , 40 , 45 , 46 ] and focus groups and interviews [ 43 ]. Two studies used a citizens’ jury model [ 47 , 48 ] and another was a nested cohort within a randomised controlled trial [ 22 ]. Studies were conducted in several countries; a breakdown by country is presented in Table 3 .…”

“…Most articles focused on the general public’s attitudes towards secondary data usage, particularly in general medicine [ 18 , 22 , 25 – 30 , 34 , 37 – 39 , 43 – 45 , 48 , 49 ], but also national cancer databases [ 31 , 41 ], clinical trials [ 21 , 32 ], fertility [ 33 ], pharmaco-epidemiological [ 47 ], and epidemiological [ 42 ] research. Other studies focused on health consumers’ attitudes to secondary data usage in individuals: attending US Veterans Affairs (VA) facilities [ 40 ] or recently discharged from tertiary care [ 15 ], or with arthritis and other chronic conditions [ 36 ].…”

“…The majority of articles discussed general attitudes towards health data linkage and secondary use [ 16 , 22 , 27 , 30 , 37 , 39 , 43 , 46 ], linking health administrative data to clinical trial data [ 20 ] or clinical trial data reuse [ 21 , 32 ], linking administrative data to survey data [ 38 ], access to medical records [ 15 , 19 , 23 , 25 , 26 , 28 , 29 , 34 , 35 , 40 , 45 , 47 , 48 ], statistical databases [ 49 ], research registries [ 17 , 18 , 31 , 33 , 36 , 41 ], and health data for epidemiological research [ 42 ]. Privacy as sociotechnical capital [ 24 ] and commercial access to health data [ 44 ] were considered in one article each.…”

“…Younger respondents expressed higher levels of trust in researchers and were more willing to let their data be used for research, but they also had high levels of privacy concerns [18]. Conversely, other studies noted that older respondents were more likely to agree to data linkage [22], while respondents aged 18 to 19 years and over 60 years had lower levels of privacy concerns compared to other groups [49].…”