Unlocking the value of data - public engagement: literature review

References

Aitken, M., McAteer, G., Davidson, S., Frostick, C., & Cunningham-Burley, S. (2018) Public Preferences regarding Data Linkage for Health Research: A Discrete Choice Experiment. International Journal of Population Data Science, 3: 11

Aitken, M., Cunningham-Burley, S., & Pagliari, C. (2016) Moving from trust to trustworthiness: Experiences of public engagement in the Scottish Health Informatics Programme. Science and Public Policy, 43(5): 713-723

Atkin, C., Crosby, B., Dunn, K., Price, G., Marston, E., Crawford, C., O’Hara7, M., et al. (2021) Perceptions of anonymised data use and awareness of the NHS data opt-out amongst patients, carers and healthcare staff. Research Involvement and Engagement, 7: 40

Ballantyne, A., & Stewart, C. (2019) Big Data and Public-Private Partnerships in Healthcare and Research. Asian Bioethics Review, 11: 315-326

Brown Trinidad, S., 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

Carter, P, Laurie, G., & Dixon-Wood, M. (2015) The social licence for research: why care.data ran into trouble. Journal of Medical Ethics, 41: 404-409

Castell, S., Robinson, L., & Ashford, H. (2018) Future data-driven technologies and the implications for use of patient data Dialogue with public, patients and healthcare professionals. Ipsos MORI.

Chico, V., Hunn, A., & Taylor, M. (2019) Public views on sharing anonymised patient-level data where there is a mixed public and private benefit. NHS Health Research Authority & University of Sheffield

Connected Health Cities. (2017) Connected Health Cities Citizens’ Juries Report. A report of two citizens’ juries designed to explore whether the planned and potential uses of health data by Connected Health Cities are acceptable to the public.

Davidson, S., McLean, C., Treanor, S., Ipsos MORI, Aitken, M., Cunningham-Burley, S., Laurie, G., Pagliari, C., & Sethi, N. (2013) Public Acceptability of Data Sharing Between the Public, Private and Third Sectors for Research Purposes. The Scottish Government

Ghafur, S., Van Dael, J., Leis, M., Darzi, A., & Sheikh, A. (2020) Public perceptions on data sharing: key insights from the UK and the USA. The Lancet, 2: e444-e446

Grande, D., Mitra, N., Shah, A., Wan, F., & Asch, D. A. (2013) Public Preferences About Secondary Uses of Electronic Health Information. JAMA Internal Medicine, 173(19): 1798-1806

Hill, E. M., Turner, E. L., Martin, R. M., & 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

Hopkins Van Mil (2021) Putting Good into Practice: A public dialogue on making public benefit assessments when using health and care data.

Hopkins, H., Kinsella, S., & Van Mil Hopkins, A. (2020) Foundations of Fairness: view on uses of NHS patients’ data and NHS operational data. A mixed methods public engagement programme with integrated Citizens’ Juries. Creating connections Hopkins van Mil.

Ipsos MORI (2021) Public deliberation in the use of health and care data.

Ipsos MORI. (2016) The one-way mirror: public attitudes to commercial access to health data. Report prepared for the Wellcome Trust.

Krahea, M., Milligan, E., & Reilly, S. (2019) Personal health information in research: Perceived risk, trustworthiness and opinions from patients attending a tertiary healthcare facility. Journal of Biomedical Informatics, 95: 103222

Milne, R., Morley, K. I., Howard, H., Niemiec, E., Nicol, D., Critchley, C., Prainsack, B. et al. (2019) Trust in genomic data sharing among members of the general public in the UK, USA, Canada and Australia. Human Genetics, 138: 1237–1246

Setälä, M., & Smith, G. (2018). Mini-Publics and deliberative democracy. In A. Bächtiger, J. S.Dryzek, J. Mansbridge, & M. E. Warren (Eds.), The Oxford handbook of deliberative democracy (pp. 300–314). Oxford: Oxford University Press.

Street, J., Fabrianesi, B., Adams, C., Flack, F., Smith, M., Carter, S. M., Lybrand, S., et al. (2021) Sharing administrative health data with private industry: A report on two citizens' juries. Health Expectations, 00: 1-12

Taylor, M. & Talyor, N. (2014) Health research access to personal confidential data in England and Wales: assessing any gap in public attitude between preferable and acceptable models of consent. Life Science, Society and Policy, 10: 15

Teng, J., Bentley, C., Burgess, M. M., O’Doherty, K.C., & McGrail, K. M. (2019) Sharing linked data sets for research: results from a deliberative public engagement event in British Columbia, Canada. International Journal of Population Data Science, 4(1): 13

Thomas, J. & Harden, A. (2008) Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Medical Research Methodology, 8: 45

TNS (2012) Open data dialogue Final Report.

Tully, M. P., Bernsten, C., Aitken, M., & Vass, C. (2020) Public preferences regarding data linkage for research: a discrete choice experiment comparing Scotland and Sweden. BMC Medical Informatics and Decision Making, 20: 109

Tully, M. P., Hassan, L., Oswald, M., & Ainsworth, J. (2019) Commercial use of health data - a public "trial" by citizen jury. Learning Health Systems, 3: e10200

Tully, M., Bozentko, K., Clement, S., Hunn, A., Hassan, L., Norris, R., Oswald, M., & Peek, N. (2018) Investigating the Extent to Which Patients Should Control Access to Patient Records for Research: A Deliberative Process Using Citizens’ Juries. Journal of Medical Internet Research, 20(3): e122.

Rand Europe (2015) Privacy of health records Europeans’ preferences on electronic health data storage and sharing.

Royal Academy of Engineering. (2010) Privacy and prejudice: Young people’s views on the development and use of Electronic Patient Records.

Understanding Patient Data & Ada Lovelace Institute. (2020) Foundations of Fairness: Where next for NHS health data partnerships?

Wachter, R. M. & Cassel, C. K. (2020) Sharing Healthcare Data with Digital Giants: Overcoming Obstacles and Reaping Benefits While Protecting Patients. JAMA, 323 (6): 507-508

Unlocking the Value of Scotland’s Data: Public Engagement around the Access of Public Sector Data with or by Private Sector Organisations

Dr Sonja Erikainen, Professor Sarah Cunningham-Burley, Centre for Biomedicine, Self and Society, University of Edinburgh 2021