Table 8 Search queries (performed August 6, 2018)

PubMed

(((((((international*[Title/Abstract]) OR supranational*[Title/Abstract]) OR ethic*[Title/Abstract]) OR moral*[Title/Abstract]) OR normative [Title/Abstract]) OR legal*[Title/Abstract])) AND (((((((((((Guideline*[Title/Abstract]) OR Guidance [Title/Abstract]) OR Code*[Title/Abstract]) OR Recommendation*[Title/Abstract]) OR Governance [Title/Abstract]) OR Declaration [Title/Abstract]) OR Regulatory [Title/Abstract]) OR Regulation*[Title/Abstract]) OR Framework [Title/Abstract])) AND ((((“big data”[Title/Abstract]) OR “data-sharing”[Title/Abstract]) OR “data-linkage”[Title/Abstract]) OR “data-intensive”[Title/Abstract]))

Embase

(‘data sharing’:ab,ti OR ‘big data’:ab,ti OR ‘data linkage’:ab,ti OR ‘data intensive’:ab,ti) AND (‘guideline*’:ab,ti OR ‘guidance’:ab,ti OR ‘code*’:ab,ti OR ‘recommendation*’:ab,ti OR ‘governance’:ab,ti OR ‘declaration’:ab,ti OR ‘regulatory’:ab,ti OR ‘regulation*’:ab,ti OR ‘framework*’:ab,ti) AND (‘international*’:ab,ti OR ‘supranational*’:ab,ti OR ‘normative’:ab,ti OR ‘moral*’:ab,ti OR ‘ethic*’:ab,ti OR ‘legal*’:ab,ti)

Google Scholar

allintitle: health OR framework OR governance OR recommendations “data sharing” [limit 2006–2017]

Scopus

TITLE-ABS (“data sharing” OR “data linkage” OR “data intensive” OR “big data”) AND TITLE-ABS (guideline* OR guidance OR code* OR recommendation* OR governance OR declaration OR regulation* OR regulatory OR framework*) AND TITLE-ABS (international* OR supranational OR normative OR moral* OR ethic* OR legal*) AND TITLE-ABS (medical OR health) AND TITLE-ABS (research)