Table 1: Study characteristics.

	Reference	Study aim	Key message(s)
1	Aitken M, Cunningham-Burley S, Pagliari C. Moving from trust to trustworthiness: Experiences of public engagement in the Scottish Health Informatics Programme. Science and Public Policy. 2016 May 11;43(5):713-723.	To explore perceptions of the role, relevance and functions of trust (or trustworthiness) in relation to research practices.	The public’s relationships of trust and/or mistrust in science and research are not straightforward; public trust is highly conditional and variable.
2	Aitken M, de St. Jorre J, Pagliari C, Jepson R, Cunningham-Burley S. Public responses to the sharing and linkage of health data for research purposes: a systematic review and thematic synthesis of qualitative studies. BMC Medical Ethics. 2016;17(73).	To explore current evidence on the public acceptability of data sharing and data linkage practices.	There is widespread (conditional) public support for data sharing and linkage for research purposes, though a range of concerns exist.
3	Aitken M, McAteer G, Davidson S, Frostick C, Cunningham-Burley S. Public Preferences regarding Data Linkage for Health Research: A Discrete Choice Experiment. International Journal of Population Data Science. 2018;3(11).	To examine the relative importance of several conditions upon which public support for research conducted through data linkage or sharing is contingent.	There is public support for the linking of health data and use by university and health service researchers without private sector involvement and with independent oversight. The type of data being linked and how profits are managed and shared are the two most important factors shaping preferences.
4	Cameron D, Pope S, Clemence M. Dialogue on Data: Exploring the public’s views on using administrative data for research purposes. Ipsos MORI Social Research Institute. 2014.	To explore public understanding and views of administrative data and data linking.	The public would be broadly happy with administrative data linking for research projects provided (i) those projects have social value, broadly defined (ii) data is deidentified, (iii) data is kept secure, and (iv) businesses are not able to access the data for profit.
5	Davidson S, McLean C, Cunningham-Burley S, Pagliari C. Public acceptability of cross sectoral data linkage: Deliberative research findings. Scottish Government Social Research. 2012 Aug.	To explore views of the public on the acceptability of linking personal data for statistical and research purposes.	The public is broadly supportive of data linkage, particularly for health research. However, support is conditional and ambivalences and concerns exist, including unease about private sector access to public sector data.
6	Davidson S, McLean C, Treanor S, Aitken M, Cunningham-Burley S, Laurie G, Sethi N, Pagliari C. Public acceptability of data sharing between the public, private and third sectors for research purposes. Scottish Government Social Research. 2013 Oct.	To enhance understanding of sensitivities around data sharing between the public, private and third sectors for statistical and research purposes.	Concerns and sensitivities around data sharing between the public, private and third sectors cluster around: security and privacy; data uses and the public interest; labelling; statistical disclosure; and transparency. There is a strong case for ongoing public engagement in the development of policy and strategy.
7	Davies M, Jones H, Conolly A. Public Attitudes to Data Linkage: A report prepared for University College London by NatCen Social Research. NatCen Social Research. 2018 March.	To explore understanding and perceptions of data linkage, particularly between health examination survey data and administrative records.	Individuals could see the benefit of providing personal data if there was personal or societal benefit. Several factors underpinned views and concerns, including: trust and legitimacy of organisations; timeframe for consent to data linkage; and transparency.
8	Ipsos MORI. The Use of Personal Health Information in Medical Research: General Public Consultation. Medical Research Council. 2007.	To identify public concerns and misconceptions surrounding use of personal health information for medical research.	If the public is informed about what medical research entails, they are generally positive towards it. However, confidentiality and consent feature highly in the debate over data use.
9	Office for National Statistics. The Census and Future Provision of Population Statistics in England and Wales: Public attitudes to the use of personal data for official statistics. 2014 March.	To explore public attitudes towards the collection and use of data for production of official statistics and research.	The public are supportive of data sharing when personal or public benefit can be demonstrated; and public views differ according to who is using the data and for what purpose.
10	Oswald M. Share and share alike? An examination of trust, anonymisation and data sharing with particular reference to an exploratory research project investigating attitudes to sharing personal data with the public sector. SCRIPTed. 2014 Dec;11(3):245-272.	To explore attitudes to sharing personal data with the public sector.	The benefits-versus-costs problem in relation to the sharing of personal data is significant: the more tangible and/or immediate the benefit, the stronger the correlation to (and possibly the cause of) comfort in data sharing.
11	Rempela ES, Barnett J, Durrant H. Public engagement with UK government data science: Propositions from a literature review of public engagement on new technologies. Government Information Quarterly. 2018 Oct;35(4):569-578.	To examine the potential for public engagement with data science.	Government data science public engagement should: consider the varied and many ‘publics’; not assume providing information will lead to acceptance; determine the contingencies of trust through trustworthy practice; incorporate robust, critical, and ongoing deliberation; and be holistic, moving beyond privacy and consent.
12	Robinson G, Dolk H, Dowds L, Given J, Kane F, Nelson E. Public Attitudes to Data Sharing in Northern Ireland: Findings from the Northern Ireland Life and Times Survey 2015. Ulster University. 2018 Feb.	To explore attitudes to data sharing amongst the Northern Ireland public.	Public support for data sharing sits on three pillars: trust in organisations, data protection measures, and public benefit. If any of these are reduced or taken away, public support falls.
13	Royal Statistical Society. Royal Statistical Society research on trust in data and attitudes toward data use/data sharing. 2014.	To get a snapshot of public trust in institutions handling their data, and attitudes towards data linkage and privacy.	There is a ‘data trust deficit’: trust in institutions to use data appropriately is lower than trust in them in general. When there are safeguards and a case for public benefit, more take a positive view in favour of data use and sharing.
14	Stockdale J, Cassell J, Ford E. “Giving something back”: A systematic review and ethical enquiry into public views on the use of patient data for research in the United Kingdom and the Republic of Ireland (Revised). Wellcome Open Research. 2019 Jan;3(6).	To explore patient and public views on patients’ medical data being used for research; to understand and map these views onto established biomedical ethical principles.	The public generally support the use of patient data for research, but demand that projects: are conducted in a secure way to prioritise privacy and minimise harm; set research objectives primarily concerned with the common good; and do this in a spirit of transparency and inclusivity of stakeholder views.
15	Tully MP, Hassan T, Oswald M, Ainsworth J. Commercial use of health data – A public “trial” by citizens' jury. Wiley: Learning Health Systems. 2019;3.	To investigate what informed citizens consider to be appropriate uses of health data in a learning health system.	Uses of anonymised patient data were considered appropriate by most when they could deliver public benefit. Positive health outcomes for patients were more acceptable than improved efficiency of NHS services.
16	Wellcome Trust. Summary Report of Qualitative Research into Public Attitudes to Personal Data and Linking Personal Data. London: Wellcome Trust. 2013 July.	To understand the general public’s attitudes to different types of personal data and data linking.	There is fear of personal data falling into the ‘wrong hands’ and widespread wariness about being ‘watched’. Main benefits associated with storing personal data are convenience, advantageous offers and efficient customer service. Anonymity and consent issues are paramount.