Moving from trust to trustworthiness: Experiences of public engagement in the Scottish Health Informatics Programme

Science and Public Policy

Volumn 43, Issue 5, 2016, Pages 713-723

  Aitken, Mhairi ^a   Cunningham Burley, Sarah ^a   Pagliari, Claudia ^a  

^a UNIVERSITY OF EDINBURGH   (United Kingdom)

Author keywords

Data linkage; Health informatics; Public engagement; Trust

Indexed keywords

INFORMATICS; PUBLIC HEALTH; RESEARCH PROGRAM;

EID: 85013658930     PISSN: 03023427     EISSN: None     Source Type: Journal    
DOI: 10.1093/scipol/scv075     Document Type: Article

References (42)

1. Asai, A., Ohnishi, M., Nishigaki, E., Sekimoto, M. et al. (2002) 'Attitudes of the Japanese public and doctors towards use of archived information and samples without informed consent: Preliminary findings based on focus group interviews'. BMC Medical Ethics, 3: 1
2. Barbour, R. (2007) Doing Focus Groups (Sage Qualitative Research Kit). London: Sage
3. Bates, S. R., Faulkner, W., Parry, S. and Cunningham-Burley, S. (2010) '"How do we know it's not been done yet?!" Trust, trust building and regulation in stem cell research'. Science and Public Policy, 37: 703-18
4. Bradwell, P. and Gallagher, N. (2007) FYI: The New Politics of Personal Information accessed 20 Apr 2016
5. Brown, N. and Michael, M. (2002) 'From authority to authenticity: The changing governance of biotechnology'. Health, Risk and Society, 4: 259-72
6. Critchley, C. R. (2008) 'Public opinion and trust in scientists: The role of the research context, and the perceived motivation of stem cell researchers'. Public Understanding of Science, 17: 309-27
7. Critchley, C. R.and Turney, L. (2004) 'Understanding Australians' perceptions of controversial research: The influence of social trust, religiosity and antiintellectualism on opposition to stem cell research'. Australian Journal of Emerging Technology and Society accessed 20 Apr 2016
8. Cunningham-Burley, S. (2006) 'Public knowledge and public trust'. Community Genetics, 9: 204-10
9. Damschroder, L. J., Pritts, J. L., Neblo, M. A., Kalarickal, R. J. et al. (2007) 'Patients, privacy and trust: Patients' willingness to allow researchers to access their medical records'. Social Science and Medicine, 64: 223-35
10. Davidson, S., McLean, C., Treanor, S., Aitken, M. et al. (2013) Public Acceptability of Data Sharing Between the Public, Private and Third Sectors for Research Purposes. (Social Research series). Edinburgh, UK: Scottish Government
11. Garrety, K., McLoughlin, I., Wilson, R., Zelle, G. and Martin, M. (2014a) 'National electronic health records and the digital disruption of moral orders'. Social Science and Medicine, 101: 70-7
12. Garrety, K., and Zelle, G. (2014b) 'Disruptive innovation in health care: Business models, moral orders and electronic records'. Social Policy and Society, 13: 579-92
13. Grant, A., Ure, J., Nicolson, D. J., Hanley, J. et al. (2013) 'Acceptability and perceived barriers and facilitators to creating a national research register to enable direct to patient enrolment into research: The Scottish Health Research Register (SHARE)'. BMC Health Services Research, 13: 422
14. Haddow, G. and Cunningham-Burley, S. (2008) 'Tokens of trust or token trust? Public consultation and 'Generation Scotland' in Researching Trust and Health, J. Brownlie, A. Greene and A. Howson (eds), pp. 152-74. London: Routledge
15. Haddow, G. Laurie, G., Cunningham-Burley, S. and Hunter, K. G. (2007) 'Tackling community concerns about commercialisation and genetic research: A modest interdisciplinary proposal'. Social Science and Medicine, 64: 272-82
16. Hagendijk, R. and Irwin, A. (2006) 'Public deliberation and governance: Engaging with science and technology in contemporary Europe'. Minerva, 44: 167-84
17. Hargreaves, I., Lewis, J. and Spears, T. (2002) Towards a Better Mark: Science, the Public and the Media. Swindon, UK: Economic and Social Research Council
18. Hill, E. M., Turner, E. L., Martin, R. M. and Donovan, J. L. (2013) '"Let's get the best quality research we can": Public awareness and acceptance of consent to use existing data in health research: A systematic review and qualitative study'. BMC Medical Research Methodology, 13: 72
19. House of Lords Science and Technology Committee (2000) Science and Society (Third Report) http://www.parliament.uk/publications/index. cfm accessed 20 Apr 2016
20. Ipsos MORI (2014) Dialogue on Data: Exploring the Public's Views on Using Linked Administrative Data for Research Purposes http://www.esrc.ac. uk/public-engagement/public-dialogues.aspx accessed 20 Apr 2016
21. Jasanoff, S. (2005) Designs on Nature: Science and Democracy in Europe and the United States. Princeton, NJ: Princeton University Press
22. McGuire, A. L., Hamilton, J. A., Lunstroth, R., McCullough, L. B. and Goldman, A. (2008) 'DNA data sharing: Research participants' perspectives'. Genetics in Medicine, 10: 46-53
23. Marks, N. J. (2011) 'Stem cell researchers' trust, ambivalence and reflexivity: Opportunities for improved science-public relations?'. Science and Public Policy, 38: 541-54
24. Medical Research Council and Ipsos MORI (2007) The Use of Personal Health Information in Medical Research: General Public Consultation-Final Report accessed 20 Apr 2016
25. Medical Research Council and Ipsos MORI (2006) Access to Collections of Data and Materials for Health Research accessed 20 Apr 2016
26. Millstone, E. and van Zwanenberg, P. (2000) 'A crisis of trust: For science, scientists or for institutions?'. Nature Medicine, 6: 1307-8
27. Munday, J. (2006) 'Identity in focus: The use of focus groups to study the construction of collective identity'. Sociology, 40: 89-105
28. Nair, K., Willison, D., Holbrook, A. and Keshavjee, K. (2004) 'Patients' consent preferences regarding the use of their health information for research purposes: A qualitative study'. Journal of Health Services Research and Policy, 9: 22-27
29. Owen, R., Macnaghten, P. and Stilgoe, J. (2012) 'Responsible research and innovation: From science in society to science for society, with society'. Science and Public Policy, 39: 751-60
30. Robling, M. R., Hood, K., Houston, H., Pill, R. et al. (2004) 'Public attitudes towards the use of primary care patient record data in medical research without consent: A qualitative study'. Journal of Medical Ethics, 30: 104-9
31. Rowe, R. and Calnan, M. (2006) 'Trust relations in health care: Developing a theoretical framework for the 'new' NHS'. Journal of Health, Organisation and Management, 20: 376-96
32. Saxena, N., Canadian Policy Research Networks and Public Involvement Network (2006) Understanding Canadians' Attitudes and Expectations: Citizens' Dialogue on Privacy and the Use of Personal Information for Health Research in Canada. CPRN, http://www.cprn.org/doc.cfm? doc=1428&l=en&print=true accessed 20 Apr 2016
33. Trinidad, S. B., Fullerton, S. M., Bares, J. M., Jarvik, G. P. et al. (2010) 'Genomic research and wide data sharing: Views of prospective participants'. Genetics in Medicine 12: 486-95
34. Trinidad, S. B., Fullerton, S. M., Jarvik, G. P. et al. (2012) 'Informed consent in genomescale research: What do prospective participants think?'. AJOB Primary Research, 3: 3-11
35. Van Gend, D. (2002) 'Keep stem cells adult-only'. Human Life Review, 28: 129-31
36. Wakeford, T. (2010) 'Third-order thinking in science communication'. Japanese Journal of Science Communication, 7: 87-93
37. Willison, D. J., Keshavjee, K., Nair, K., Goldsmith, C. and Holbrook, A. M. (2003) 'Patients' consent preferences for research uses of information in electronic medical records: Interview and survey data'. BMJ, 326(7385): 373
38. Wynne, B. (1992) 'Misunderstood misunderstanding: Social identities and the public uptake of science'. Public Understanding of Science, 1: 281-304
39. Wynne, B. (1996) 'May the sheep safely graze? A reflexive view of the expert-lay knowledge divide' in Risk Environment and Modernity: Towards a New Ecology, S. Lash, B. Szerszynski and B. Wynne (eds), pp. 44-83. London: Sage
40. Wynne, B. (2006) 'Public engagement as a means of restoring public trust in science: Hitting the notes, but missing the music?'. Community Genetics, 9: 211-20
41. Wynne, B. (2008) 'Elephants in the rooms where publics encounter "science"?: A response to Darrin Durant, "Accounting for expertise: Wynne and the autonomy of the lay public"'. Public Understanding of Science, 17: 21-33
42. Yearley, S. (2005) Making Sense of Science: Understanding the Social Study of Science. London: Sage