Table 1 Key search terms

(lay OR patient* OR public OR citizen$1)

AND

(attitude* OR view$1 OR perspective* OR opinion$1)

AND

(data OR record$1)

AND

(share$ OR sharing OR link$2 OR linkage)

AND

Research

AND

(access OR purpose$1)

AND

(qualitative OR ethnograph* OR “grounded theory” OR “in depth interview$1” OR “structured interview$1” OR “focus group$1” OR “case study” OR “case studies” OR “case series” OR “citizen$2 juries” OR vignette* OR observation*)

□ Asterisks (“*”) are used as a wildcard to allow for any given search term to be truncated or remain the same.

□ Dollar signs (“$”) followed by a number refer to the number of additional characters allowed for each selected term.