Table 2 Inclusion and exclusion criteria

Study Design

All studies based on primary evidence.

All studies reporting qualitative research relevant to the phenomenon [37] including, but not limited to: focus groups, in-depth interviews, case studies, vignettes, citizens’ juries, ethnographic observation, field notes.

Mixed methods studies with a qualitative component that applied qualitative methods to collect and synthesise the research were included if the findings were presented separately from the quantitative data.

All studies that included first-order constructs directly reporting participants’ responses, such as quotations [19].

All qualitative studies that provided exploratory, descriptive and/or explanatory findings [38].

All studies based on secondary evidence.

All studies that were solely based on quantitative research.

All studies that did not include first-order constructs directly reporting participants’ responses, such as quotations [19].

Study Population

All studies researching public (including patient/lay) perspectives.

Studies involving public and expert opinions were included if public and expert responses were reported separately.

All studies that did not report public perspectives.

Research Topic

All studies that discussed the sharing and linkage of data in research.

All studies that did not discuss the sharing and linkage of data in research.