Public Acceptability of Cross-Sectoral Data Linkage

A report of recent public deliberative events to explore the views of the public on the acceptability of linking personal data for statistical and research purposes, thereby identifying particular sensitivities and potential barriers to public confidence and exploring mechanisms for overcoming concerns.


Aitken, M (2011a) Linking Social Care, Housing and Health Data: Social Care Clients' and Patients' Views, Edinburgh: Scottish Government Social Research
[online at:].

Aitken, M (2011b) SHIP Public Engagement: Summary of Focus Group Findings, Scottish Health Informatics Programme
[online at:].

Bhopal, R., Fischbacher, C., Povey, C., Chalmers, J., Mueller, G., Steiner, M., Brown, H., Brewster, D.H. and Bansal, N. (2011), 'Cohort Profile: Scottish Health and Ethnicity Linkage Study of 4.65 million people exploring ethnic variations in disease in Scotland'. International Journal of Epidemiology, Vol.40, No.5, pp.1168-1175

Damschroder, L.J., Pritts, J.L., Neblo, M.A., Kalarickal, R.J., Creswell, J.W. & Hayward, R.A. (2007) 'Patients, privacy and trust: Patients' willingness to allow researchers to access their medical records' Social Science and Medicine 64: 223-235.

Edinburgh Study of Youth Transitions and Crime:

Haddow, G., Laurie, G., Cunningham-Burley, S. & Hunter, K.G. (2007) 'Tackling Community Concerns about Commercialisation and Genetic Research: A modest interdisciplinary proposal', Social Science and Medicine 64, 272 - 282.

Heath, J. (2010) 'Emerging Consumers View of Secondary Uses of Medical Data', IEEE International Symposium on Technology and Society

Hunter, I., Whiddett, R.J., Norris, A.C., McDonald, B.W., and Waldon, J.A.(2009), 'New Zealanders' attitudes towards access to their electronic health records: Preliminary results from a national study using vignettes', Health informatics Journal, Vol 15, No.3, pp.212-228.

Jones, P. & Elias, P. (2006) Administrative data as a research resource: a selected audit, ESRC National Centre for Research Methods
[online at:]

Morris, A.D., Boyle, D., McAlpine, R., Emslie-Smith, A., Jung, R.T., and MacDonald, T. (1997), 'The diabetes audit and research in Tayside Scotland (darts) study: electronic record linkage to create a diabetes register'. British Medical Journal, 315:524

Scottish Government (2012) A Scotland-wide Data Linkage Framework for Statistics and Research: Consultation Paper on the Aims and Guiding Principles, Edinburgh: Scottish Government.

Trinidad, S.B., Fullerton, S. M., Bares, J. M., Jarvik, G.P., Larson, E.B. & Burke, W., (2010) 'Genomic research and wide data sharing: Views of prospective participants' Genetics in Medicine 12(8): 486-495.

Willison, D.J., Schwartz, L., Abelson, J., Charles, C., Swinton, M. Northcup, D. & Thabane, L. (2007) 'Alternatives to Project-specific Consent for Access to Personal Information for Health Research: What is the Opinion of the Canadian Public?' Journal of the American Medical Informatics Association 14(6): 706-712.


Email: Sara Grainger

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