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  • Jessica Morley

Goldacre Review Reading Lists

The Goldacre Review might already be over 100,000 words in length on its own, but there is always more to read on the topics of NHS Service Analytics; Open Working; Privacy & Security; Trusted Research Environments; Information Governance, Ethics, and PPIE; Data Curation; and Strategy. With this in mind, below are my curated reading lists for each of these topics.


Chapter 1: NHS Service Analytics

  • Alturkistani, A., J. Car, A. Majeed, D. Brindley, G. Wells, and E. Meinert. ‘Determining the Effectiveness of a Massive Open Online Course in Data Science for Health’, 2018-July:27–34, 2018. https://ora.ox.ac.uk/objects/uuid:adbfa8a5-cf3a-432b-8e84-9a070a5302f1

  • Bardsley, Martin and Health Foundation (Great Britain). Understanding Analytical Capability in Health Care: Do We Have More Data than Insight?, 2016.

  • Bevan, H. (2010). Review: How can we build skills to transform the healthcare system? Journal of Research in Nursing, 15(2), 139–148. Scopus. https://doi.org/10.1177/1744987109357812

  • Brown, B., Peek, N., & Buchan, I. (2015). The Case for Conceptual and Computable Cross-Fertilization between Audit and Feedback and Clinical Decision Support (Vol. 216, p. 423). https://doi.org/10.3233/978-1-61499-564-7-419

  • Chen, L.-Y. A., & Fawcett, T. N. (2019). Service evaluation: A grey area of research? Nursing Ethics, 26(4), 1172–1185. Scopus. https://doi.org/10.1177/0969733017742961

  • Devitt, Nicola, and Jeannette Murphy. ‘A Survey of the Information Management and Technology Training Needs of Doctors in an Acute NHS Trust in the United Kingdom: Survey of IM&T Training Needs of UK Doctors, Nicola Devitt & Jeannette Murphy’. Health Information & Libraries Journal 21, no. 3 (18 August 2004): 164–72. https://doi.org/10.1111/j.1471-1842.2004.00492.x.

  • Fridsma, Douglas B. ‘Health Informatics: A Required Skill for 21st Century Clinicians’. BMJ, 12 July 2018, k3043. https://doi.org/10.1136/bmj.k3043.

  • Goldacre, B., Bardsley, M., Benson, T., Cheema, K., Chinn, R., Coughlan, E., Dougan, S., Farr, M., Hawkins, L., Jonas, A., Kinnear, A., Mcinnes, M., Mohammed, M. A., Morton, C., Pasumarthy, R., Pettinger, N., Rowland, B., Sebire, N., Stroner, P., … Morley, J. (2020). Bringing NHS data analysis into the 21st century. Journal of the Royal Society of Medicine, 113(10), 383–388. Scopus. https://doi.org/10.1177/0141076820930666

  • Lusignan, S. de, and B. Ellis. ‘Is the Time Right for Direct Entry into a Career in Health and Biomedical Informatics?’ Informatics in Primary Care 13, no. 3 (2005): 167–70.

  • Madden, A. ‘Health Informatics and the Importance of Coding’. Anaesthesia and Intensive Care Medicine 15, no. 2 (2014): 62–63. https://doi.org/10.1016/j.mpaic.2013.12.005.

  • Martin, G. P., McKee, L., & Dixon-Woods, M. (2015). Beyond metrics? Utilizing ‘soft intelligence’ for healthcare quality and safety. Social Science and Medicine, 142, 19–26. Scopus. https://doi.org/10.1016/j.socscimed.2015.07.027

  • McCartney, S., & Brown, R. B. (1999). Managing by numbers: Using outcome measures in the NHS. International Journal of Health Care Quality Assurance, 12(1), 6–12. Scopus. https://doi.org/10.1108/09526869910249622

  • Millen, D. ‘Establishing Health Informatics as a Recognised and Respected Profession in the UK National Health Service’. Studies in Health Technology and Informatics 95 (2003): 834–38. https://doi.org/10.3233/978-1-60750-939-4-834.

  • Sandiford, P., Annett, H., & Cibulskis, R. (1992). What can information systems do for primary health care? An international perspective. Social Science & Medicine (1982), 34(10), 1077–1087. https://doi.org/10.1016/0277-9536(92)90281-t

  • Tomson, C. R. V. (2009). What would it take to improve the quality of healthcare: More money, or more data? Clinical Medicine, Journal of the Royal College of Physicians of London, 9(2), 140–144. Scopus. https://doi.org/10.7861/clinmedicine.9-2-140


Chapter 2: Open Working

  • Bacon, Seb, and Ben Goldacre. ‘Barriers to Working With National Health Service England’s Open Data’. Journal of Medical Internet Research 22, no. 1 (13 January 2020): e15603. https://doi.org/10.2196/15603

  • Cosgriff, C. V., Celi, L. A., & Stone, D. J. (2019). Critical Care, Critical Data. Biomedical Engineering and Computational Biology, 10, 1179597219856564. https://doi.org/10.1177/1179597219856564

  • Goldacre, Ben. ‘All BMJ Research Papers Should Share Their Analytic Code’. BMJ, 18 February 2016, i886. https://doi.org/10.1136/bmj.i886.

  • Janamanchi, B., Katsamakas, E., Raghupathi, W., & Gao, W. (2009). The State and Profile of Open Source Software Projects in health and medical informatics. International Journal of Medical Informatics, 78(7), 457–472. Scopus. https://doi.org/10.1016/j.ijmedinf.2009.02.006

  • Rockhold, F.W. ‘Statistical Controversies in Clinical Research: Data Access and Sharing-Can We Be More Transparent about Clinical Research? Let’s Do What’s Right for Patients’. Annals of Oncology 28, no. 8 (2017): 1734–37. https://doi.org/10.1093/annonc/mdx123.


Chapter 3: Privacy & Security

  • Abouelmehdi, Karim, Abderrahim Beni-Hessane, and Hayat Khaloufi. ‘Big Healthcare Data: Preserving Security and Privacy’. Journal of Big Data 5, no. 1 (December 2018): 1. https://doi.org/10.1186/s40537-017-0110-7

  • Abouelmehdi, Karim, Abderrahim Beni-Hssane, Hayat Khaloufi, and Mostafa Saadi. ‘Big Data Security and Privacy in Healthcare: A Review’. Procedia Computer Science 113 (2017): 73–80. https://doi.org/10.1016/j.procs.2017.08.292.

  • Anderson, Ross. ‘Under Threat: Patient Confidentiality and NHS Computing’. Drugs and Alcohol Today 6, no. 4 (December 2006): 13–17. https://doi.org/10.1108/17459265200600060.

  • Arora, Chirag. ‘Digital Health Fiduciaries: Protecting User Privacy When Sharing Health Data’. Ethics and Information Technology, 13 February 2019. https://doi.org/10.1007/s10676-019-09499-x.

  • Binjubeir, Mohammed, Abdulghani Ali Ahmed, Mohd Arfian Bin Ismail, Ali Safaa Sadiq, and Muhammad Khurram Khan. ‘Comprehensive Survey on Big Data Privacy Protection’. IEEE Access 8 (2020): 20067–79. https://doi.org/10.1109/ACCESS.2019.2962368.

  • Borgesius, Frederik Zuiderveen, Jonathan Gray, and Mireille van Eechoud. ‘Open Data, Privacy, and Fair Information Principles: Towards a Balancing Framework’. Berkeley Technology Law Journal 30, no. 3 (2015): 2073–2131.

  • Borking, John J. ‘Why Adopting Privacy Enhancing Technologies (PETs) Takes so Much Time’. In Computers, Privacy and Data Protection: An Element of Choice, edited by Serge Gutwirth, Yves Poullet, Paul De Hert, and Ronald Leenes, 309–41. Dordrecht: Springer Netherlands, 2011. https://doi.org/10.1007/978-94-007-0641-5_15.

  • Chernyshev, M., S. Zeadally, and Z. Baig. ‘Healthcare Data Breaches: Implications for Digital Forensic Readiness’. Journal of Medical Systems 43, no. 1 (2019). https://doi.org/10.1007/s10916-018-1123-2.

  • Chevrier, R., Foufi, V., Gaudet-Blavignac, C., Robert, A., & Lovis, C. (2019). Use and Understanding of Anonymization and De-Identification in the Biomedical Literature: Scoping Review. JOURNAL OF MEDICAL INTERNET RESEARCH, 21(5). https://doi.org/10.2196/13484

  • Chong, Kah Meng. ‘Privacy-Preserving Healthcare Informatics: A Review’. Edited by L.E. Teoh and W.S. Ng. ITM Web of Conferences 36 (2021): 04005. https://doi.org/10.1051/itmconf/20213604005.

  • D’Acquisto, Giuseppe, Josep Domingo-Ferrer, Panayiotis Kikiras, Vicenç Torra, Yves-Alexandre de Montjoye, and Athena Bourka. ‘Privacy by Design in Big Data: An Overview of Privacy Enhancing Technologies in the Era of Big Data Analytics’. ArXiv:1512.06000 [Cs], 2015. https://doi.org/10.2824/641480.

  • Di Iorio, C. T., Carinci, F., Oderkirk, J., Smith, D., Siano, M., De Marco, D. A., De Lusignan, S., Hamalainen, P., & Benedetti, M. M. (2020). Assessing data protection and governance in health information systems: A novel methodology of Privacy and Ethics Impact and Performance Assessment (PEIPA). Journal of Medical Ethics. Scopus. https://doi.org/10.1136/medethics-2019-105948

  • El Emam, K., Mosquera, L., & Bass, J. (2020). Evaluating Identity Disclosure Risk in Fully Synthetic Health Data: Model Development and Validation. JOURNAL OF MEDICAL INTERNET RESEARCH, 22(11). https://doi.org/10.2196/23139

  • El Emam, K., S. Rodgers, and B. Malin. ‘Anonymising and Sharing Individual Patient Data’. BMJ 350, no. mar20 1 (20 March 2015): h1139–h1139. https://doi.org/10.1136/bmj.h1139.

  • Heurix, Johannes, Peter Zimmermann, Thomas Neubauer, and Stefan Fenz. ‘A Taxonomy for Privacy Enhancing Technologies’. Computers & Security 53 (September 2015): 1–17. https://doi.org/10.1016/j.cose.2015.05.002.

  • Hordern, V. ‘Data Protection Compliance in the Age of Digital Health’. European Journal of Health Law 23, no. 3 (2016): 248–64. https://doi.org/10.1163/15718093-12341393.

  • Hornung, Gerrit. ‘Regulating Privacy Enhancing Technologies: Seizing the Opportunity of the Future European Data Protection Framework’. Innovation: The European Journal of Social Science Research 26, no. 1–2 (March 2013): 181–96. https://doi.org/10.1080/13511610.2013.723381.

  • Jayabalan, Manoj, and Muhammad Ehsan Rana. ‘Anonymizing Healthcare Records: A Study of Privacy Preserving Data Publishing Techniques’. Advanced Science Letters 24, no. 3 (1 March 2018): 1694–97. https://doi.org/10.1166/asl.2018.11139.

  • Jin, Hao, Yan Luo, Peilong Li, and Jomol Mathew. ‘A Review of Secure and Privacy-Preserving Medical Data Sharing’. IEEE Access 7 (2019): 61656–69. https://doi.org/10.1109/ACCESS.2019.2916503.

  • Kayaalp, M. (2018). Patient Privacy in the Era of Big Data. Balkan Medical Journal, 35(1), 8–17. https://doi.org/10.4274/balkanmedj.2017.0966

  • Kobayashi, S., T.B. Kane, and C. Paton. ‘The Privacy and Security Implications of Open Data in Healthcare’. Yearbook of Medical Informatics 27, no. 1 (2018): 41–47. https://doi.org/10.1055/s-0038-1641201.

  • Mourby, M. (2020). Anonymity in EU health law: Not an alternative to information governance. Medical Law Review, 28(3), 478–501. Scopus. https://doi.org/10.1093/medlaw/fwaa010

  • O’Doherty, K. C., Christofides, E., Yen, J., Bentzen, H. B., Burke, W., Hallowell, N., Koenig, B. A., & Willison, D. J. (2016). If you build it, they will come: Unintended future uses of organised health data collections Donna Dickenson, Sandra Soo-Jin Lee, and Michael Morrison. BMC Medical Ethics, 17(1). Scopus. https://doi.org/10.1186/s12910-016-0137-x

  • Ohm, P. (2010). Broken promises of privacy: Responding to the surprising failure of anonymization. UCLA Law Review, 57(6), 1701–1778.

  • O’Keefe, C.M., and D.B. Rubin. ‘Individual Privacy versus Public Good: Protecting Confidentiality in Health Research’. Statistics in Medicine 34, no. 23 (2015): 3081–3103. https://doi.org/10.1002/sim.6543.

  • Petersen, C. (2018). Through Patients’ Eyes: Regulation, Technology, Privacy, and the Future. Yearbook of Medical Informatics, 27(1), 10–15. Scopus. https://doi.org/10.1055/s-0038-1641193

  • Price, W. N., & Cohen, I. G. (2019). Privacy in the age of medical big data. Nature Medicine, 25(1), 37–43. https://doi.org/10.1038/s41591-018-0272-7

  • Scheibner, J., Raisaro, J., Troncoso-Pastoriza, J., Ienca, M., Fellay, J., Vayena, E., & Hubaux, J. (2021). Revolutionizing Medical Data Sharing Using Advanced Privacy-Enhancing Technologies: Technical, Legal, and Ethical Synthesis. JOURNAL OF MEDICAL INTERNET RESEARCH, 23(2). https://doi.org/10.2196/25120

  • Sethi, N., & Laurie, G. T. (2013). Delivering proportionate governance in the era of eHealth: Making linkage and privacy work together. Medical Law International, 13(2–3), 168–204. Scopus. https://doi.org/10.1177/0968533213508974

  • Sweeney, L. (2000). Simple Demographics Often Identify People Uniquely. Carnegie Mellon University, Data Privacy Working Paper 3. Retrieved from https://dataprivacylab.org/projects/identifiability/index.html

  • Wachter, S. (2017). Privacy: Primus Inter Pares Privacy as a Precondition for Self-Development, Personal Fulfilment and the Free Enjoyment of Fundamental Human Rights. SSRN Electronic Journal. https://doi.org/10.2139/ssrn.2903514

  • Wirth, F., Meurers, T., Johns, M., & Prasser, F. (2021). Privacy-preserving data sharing infrastructures for medical research: Systematization and comparison. BMC MEDICAL INFORMATICS AND DECISION MAKING, 21(1). https://doi.org/10.1186/s12911-021-01602-x


Chapter 4: Trusted Research Environments

  • Crossfield, S., O. Johnson, and T. Fleming. ‘Large Scale Infrastructure for Health Data Analytics’. In Proceedings - 2016 IEEE International Conference on Healthcare Informatics, ICHI 2016, 306, 2016. https://doi.org/10.1109/ICHI.2016.48.

  • Demir, I., & Murtagh, M. J. (2013). Data sharing across biobanks: Epistemic values, data mutability and data incommensurability. New Genetics and Society, 32(4), 350–365. Scopus. https://doi.org/10.1080/14636778.2013.846582

  • Harris, S., S. Shi, D. Brealey, N.S. MacCallum, S. Denaxas, D. Perez-Suarez, A. Ercole, et al. ‘Critical Care Health Informatics Collaborative (CCHIC): Data, Tools and Methods for Reproducible Research: A Multi-Centre UK Intensive Care Database’. International Journal of Medical Informatics 112 (2018): 82–89. https://doi.org/10.1016/j.ijmedinf.2018.01.006.

  • Jones, K., Daniels, H., Heys, S., Lacey, A., & Ford, D. V. (2020). Toward a risk-utility data governance framework for research using genomic and phenotypic data in safe havens: Multifaceted review. Journal of Medical Internet Research, 22(5). Scopus. https://doi.org/10.2196/16346

  • Jones, Kerina H., David V. Ford, Chris Jones, Rohan Dsilva, Simon Thompson, Caroline J. Brooks, Martin L. Heaven, Daniel S. Thayer, Cynthia L. McNerney, and Ronan A. Lyons. ‘A Case Study of the Secure Anonymous Information Linkage (SAIL) Gateway: A Privacy-Protecting Remote Access System for Health-Related Research and Evaluation’. Journal of Biomedical Informatics 50 (2014): 196–204. https://doi.org/10.1016/j.jbi.2014.01.003.

  • Laurie, G., Ainsworth, J., Cunningham, J., Dobbs, C., Jones, K. H., Kalra, D., Lea, N. C., & Sethi, N. (2015). On moving targets and magic bullets: Can the UK lead the way with responsible data linkage for health research? International Journal of Medical Informatics, 84(11), 933–940. Scopus. https://doi.org/10.1016/j.ijmedinf.2015.08.011

  • Lyons, R. A., Jones, K. H., John, G., Brooks, C. J., Verplancke, J.-P., Ford, D. V., Brown, G., & Leake, K. (2009). The SAIL databank: Linking multiple health and social care datasets. BMC Medical Informatics and Decision Making, 9(1). Scopus. https://doi.org/10.1186/1472-6947-9-3

  • Pavlenko, E., Strech, D., & Langhof, H. (2020). Implementation of data access and use procedures in clinical data warehouses. A systematic review of literature and publicly available policies. BMC MEDICAL INFORMATICS AND DECISION MAKING, 20(1). https://doi.org/10.1186/s12911-020-01177-z

  • Popovic, J. R. (2017). Distributed data networks: A blueprint for Big Data sharing and healthcare analytics. Annals of the New York Academy of Sciences, 1387(1), 105–111. https://doi.org/10.1111/nyas.13287

  • Trace, S., Bracher, M., & Kolstoe, S. E. (2020). Determining the level of data sharing, and number of publications, from research databases that have been given a favourable opinion by UK research ethics committees. BMJ Open, 10(9), e039756. Scopus. https://doi.org/10.1136/bmjopen-2020-039756

  • Van Panhuis, W. G., Paul, P., Emerson, C., Grefenstette, J., Wilder, R., Herbst, A. J., Heymann, D., & Burke, D. S. (2014). A systematic review of barriers to data sharing in public health. BMC Public Health, 14(1). Scopus. https://doi.org/10.1186/1471-2458-14-1144

  • Williams, G., & Pigeot, I. (2017). Consent and confidentiality in the light of recent demands for data sharing. Biometrical Journal, 59(2), 240–250. Scopus. https://doi.org/10.1002/bimj.201500044


Chapter 5: IG, Ethics and PPIE

  • Ada Lovelace Institute and UK AI Council. ‘Exploring Legal Mechanisms for Data Stewardship’, 5 March 2021. https://www.adalovelaceinstitute.org/report/legal-mechanisms-data-stewardship/.

  • Adams, M., & McKevitt, C. (2015). Configuring the patient as clinical research subject in the UK national health service. Anthropology and Medicine, 22(2), 138–148. https://doi.org/10.1080/13648470.2014.997192

  • Aggarwal, R., Farag, S., Martin, G., Ashrafian, H., & Darzi, A. (2021). Patient perceptions on data sharing and applying artificial intelligence to health care data: Cross-sectional survey. Journal of Medical Internet Research, 23(8).. https://doi.org/10.2196/26162

  • Aicardi, C., Del Savio, L., Dove, E. S., Lucivero, F., Tempini, N., & Prainsack, B. (2016). Emerging ethical issues regarding digital health data. On the world medical association draft declaration on ethical considerations regarding health databases and biobanks. Croatian Medical Journal, 57(2), 207–213. https://doi.org/10.3325/cmj.2016.57.207

  • Aitken, M., De St Jorre, J., Pagliari, C., Jepson, R., & Cunningham-Burley, S. (2016). 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, 17(1), 1–24. Scopus. https://doi.org/10.1186/s12910-016-0153-x

  • Aitken, M., S. Cunningham-Burley, and C. Pagliari. ‘Moving from Trust to Trustworthiness: Experiences of Public Engagement in the Scottish Health Informatics Programme’. Science and Public Policy 43, no. 5 (2016): 713–23. https://doi.org/10.1093/scipol/scv075.

  • ​​Aitken, Mhairi, Mary P Tully, Carol Porteous, Simon Denegri, Sarah Cunningham-Burley, Natalie Banner, Corri Black, et al. ‘Consensus Statement on Public Involvement and Engagement with Data-Intensive Health Research’. International Journal of Population Data Science 4, no. 1 (12 February 2019). https://doi.org/10.23889/ijpds.v4i1.586.

  • Allen, Judy, C. D’arcy J. Holman, Eric M. Meslin, and Fiona Stanley. ‘Privacy Protectionism and Health Information: Is There Any Redress for Harms to Health?’ Journal of Law and Medicine 21, no. 2 (December 2013): 473–85.

  • Atkin, C., Crosby, B., Dunn, K., Price, G., Marston, E., Crawford, C., O’Hara, M., Morgan, C., Levermore, M., Gallier, S., Modhwadia, S., Attwood, J., Perks, S., Denniston, A. K., Gkoutos, G., Dormer, R., Rosser, A., Ignatowicz, A., Fanning, H., & Sapey, E. (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(1). https://doi.org/10.1186/s40900-021-00281-2

  • Bagenal, J., and A. Naylor. ‘Harnessing the Value of NHS Patient Data’. The Lancet 392, no. 10163 (2018): 2420–22. https://doi.org/10.1016/S0140-6736(18)32942-8.

  • Ballantyne, A., and G.O. Schaefer. ‘Consent and the Ethical Duty to Participate in Health Data Research’. Journal of Medical Ethics 44, no. 6 (2018): 392–96. https://doi.org/10.1136/medethics-2017-104550.

  • Ballantyne, A., and G.O. Schaefer. ‘Public Interest in Health Data Research: Laying out the Conceptual Groundwork’. Journal of Medical Ethics 46, no. 9 (2020): 610–16. https://doi.org/10.1136/medethics-2020-106152.

  • Bhuyan, S., Bailey-DeLeeuw, S., Wyant, D., & Chang, C. (2016). Too Much or Too Little? How Much Control Should Patients Have Over EHR Data? JOURNAL OF MEDICAL SYSTEMS, 40(7). https://doi.org/10.1007/s10916-016-0533-2

  • Bialobrzeski, A., J. Ried, and P. Dabrock. ‘Differentiating and Evaluating Common Good and Public Good: Making Implicit Assumptions Explicit in the Contexts of Consent and Duty to Participate’. Public Health Genomics 15, no. 5 (2012): 285–92. https://doi.org/10.1159/000336861.

  • Bietz, M.J., C. Bloss, J. Godino, and K. Patrick. ‘Exploring Personal Data for Public Good Research’. Interactions 22, no. 5 (2015): 62–65. https://doi.org/10.1145/2810221.

  • Bietz, M., Bloss, C., Calvert, S., Godino, J., Gregory, J., Claffey, M., Sheehan, J., & Patrick, K. (2016). Opportunities and challenges in the use of personal health data for health research. JOURNAL OF THE AMERICAN MEDICAL INFORMATICS ASSOCIATION, 23(E1), E42–E48. https://doi.org/10.1093/jamia/ocv118

  • Chan, T., Di Iorio, C. T., De Lusignan, S., Lo Russo, D., Kuziemsky, C., & Liaw, S.-T. (2016). UK National Data Guardian for Health and Care’s Review of Data Security: Trust, better security and opt-outs. Journal of Innovation in Health Informatics, 23(3), 627–632. Scopus. https://doi.org/10.14236/jhi.v23i3.909

  • Cheah, P. Y., & Piasecki, J. (2020). Data Access Committees. BMC Medical Ethics, 21(1). Scopus. https://doi.org/10.1186/s12910-020-0453-z

  • Curcin, V., Soljak, M., & Majeed, A. (2012). Managing and exploiting routinely collected NHS data for research. Informatics in Primary Care, 20(4), 225–231. Scopus. https://doi.org/10.14236/jhi.v20i4.1

  • Di Iorio, C T, F Carinci, and J Oderkirk. ‘Health Research and Systems’ Governance Are at Risk: Should the Right to Data Protection Override Health?’ Journal of Medical Ethics 40, no. 7 (July 2014): 488–92. https://doi.org/10.1136/medethics-2013-101603.

  • Dulhanty, A. (2021). Present value of future health data: Ethics of data collection and use. Bulletin of the World Health Organization, 99(2), 162–163. https://doi.org/10.2471/BLT.19.237248

  • Dumville, J.C., J. Watson, P. Raynor, and D.J. Torgerson. ‘Research Governance: A Barrier to Ethical Research?’ QJM: An International Journal of Medicine 97, no. 3 (March 2004): 113–14. https://doi.org/10.1093/qjmed/hch026.

  • Erikainen, S., Friesen, P., Rand, L., Jongsma, K., Dunn, M., Sorbie, A., McCoy, M., Bell, J., Burgess, M., Chen, H., Chico, V., Cunningham-Burley, S., Darbyshire, J., Dawson, R., Evans, A., Fahy, N., Finlay, T., Frith, L., Goldenberg, A., … Sheehan, M. (2021). Public involvement in the governance of population-level biomedical research: Unresolved questions and future directions. Journal of Medical Ethics, 47(7), 522–525. Scopus. https://doi.org/10.1136/medethics-2020-106530

  • Ferretti, A., Ienca, M., Sheehan, M., Blasimme, A., Dove, E. S., Farsides, B., Friesen, P., Kahn, J., Karlen, W., Kleist, P., Liao, S. M., Nebeker, C., Samuel, G., Shabani, M., Rivas Velarde, M., & Vayena, E. (2021). Ethics review of big data research: What should stay and what should be reformed? BMC Medical Ethics, 22(1), 51. https://doi.org/10.1186/s12910-021-00616-4

  • Ford, E., Kazempour, Y., Cooper, M. J. F., Katikireddi, S. V., & Boyd, A. (2020). Media content analysis of general practitioners’ reactions to care.data expressed in the media: What lessons can be learned for future NHS data-sharing initiatives? BMJ Open, 10(9). Scopus. https://doi.org/10.1136/bmjopen-2020-038006

  • Foster, V., & Young, A. (2012). The use of routinely collected patient data for research: A critical review. Health (United Kingdom), 16(4), 448–463. Scopus. https://doi.org/10.1177/1363459311425513

  • Foundations of Fairness: Where next for NHS health data partnerships. Understanding Patient Data and the Ada Lovelace Institute, March 2020.

  • Geissbuhler, A., Safran, C., Buchan, I., Bellazzi, R., Labkoff, S., Eilenberg, K., Leese, A., Richardson, C., Mantas, J., Murray, P., & De Moor, G. (2013). Trustworthy reuse of health data: A transnational perspective. International Journal of Medical Informatics, 82(1), 1–9. Scopus. https://doi.org/10.1016/j.ijmedinf.2012.11.003

  • Godlee, Fiona. ‘What Can We Salvage from Care.Data?’ BMJ, 14 July 2016, i3907. https://doi.org/10.1136/bmj.i3907.

  • Harmon, S. H. E., & Chen, K.-H. (2012). Medical research data-sharing: The ‘public good’ and vulnerable groups. Medical Law Review, 20(4), 516–539. Scopus. https://doi.org/10.1093/medlaw/fws006

  • Hassan, L., Nenadic, G., & Tully, M. P. (2021). A social media campaign (#datasaveslives) to promote the benefits of using health data for research purposes: Mixed methods analysis. Journal of Medical Internet Research, 23(2). Scopus. https://doi.org/10.2196/16348

  • Hays, R., and G. Daker-White. ‘The Care.Data Consensus? A Qualitative Analysis of Opinions Expressed on Twitter Health Policies, Systems and Management in High-Income Countries’. BMC Public Health 15, no. 1 (2015). https://doi.org/10.1186/s12889-015-2180-9.

  • Johansson, J. V., Bentzen, H. B., Shah, N., Haraldsdóttir, E., Jónsdóttir, G. A., Kaye, J., Mascalzoni, D., & Veldwijk, J. (2021). Preferences of the public for sharing health data: Discrete choice experiment. JMIR Medical Informatics, 9(7). Scopus. https://doi.org/10.2196/29614

  • Jones, K.H., G. Laurie, L. Stevens, C. Dobbs, D.V. Ford, and N. Lea. ‘The Other Side of the Coin: Harm Due to the Non-Use of Health-Related Data’. International Journal of Medical Informatics 97 (2017): 43–51. https://doi.org/10.1016/j.ijmedinf.2016.09.010

  • Kalkman, S., Van Delden, J., Banerjee, A., Tyl, B., Mostert, M., & Van Thiel, G. (2019). Patients’ and public views and attitudes towards the sharing of health data for research: A narrative review of the empirical evidence. Journal of Medical Ethics. Scopus. https://doi.org/10.1136/medethics-2019-105651

  • Knottnerus, J.A. ‘Research Data as a Global Public Good’. Journal of Clinical Epidemiology 70 (2016): 270–71. https://doi.org/10.1016/j.jclinepi.2015.05.034.

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  • Laurie, G. T. (2019). Cross-Sectoral Big Data: The Application of an Ethics Framework for Big Data in Health and Research. Asian Bioethics Review, 11(3), 327–339. Scopus. https://doi.org/10.1007/s41649-019-00093-3

  • Lee, L. M. (2017). Ethics and subsequent use of electronic health record data. Journal of Biomedical Informatics, 71, 143–146. https://doi.org/10.1016/j.jbi.2017.05.022

  • Lounsbury, O., Roberts, L., Goodman, J. R., Batey, P., Naar, L., Flott, K. M., Lawrence-Jones, A., Ghafur, S., Darzi, A., & Neves, A. L. (2021). Opening a ⇜can of worms⇝ to explore the public’s hopes and fears about health care data sharing: Qualitative study. Journal of Medical Internet Research, 23(2). Scopus. https://doi.org/10.2196/22744

  • Mathers, N., Sullivan, R., Dhillon, A., Rafi, I., & Bell, A. (2017). Editorials: The use of NHS patient data: Report by the National Data Guardian for Health and Care. British Journal of General Practice, 67(655), 56–57. Scopus. https://doi.org/10.3399/bjgp17X688933

  • Mann, S. P., Savulescu, J., & Sahakian, B. J. (2016). Facilitating the ethical use of health data for the benefit of society: Electronic health records, consent and the duty of easy rescue. Philosophical Transactions of the Royal Society A: Mathematical, Physical and Engineering Sciences, 374(2083). https://doi.org/10.1098/rsta.2016.0130

  • McKeown, Alex, Miranda Mourby, Paul Harrison, Sophie Walker, Mark Sheehan, and Ilina Singh. ‘Ethical Issues in Consent for the Reuse of Data in Health Data Platforms’. Science and Engineering Ethics 27, no. 1 (February 2021): 9. https://doi.org/10.1007/s11948-021-00282-0.

  • Mirchev, M., Mircheva, I., & Kerekovska, A. (2020). The Academic Viewpoint on Patient Data Ownership in the Context of Big Data: Scoping Review. Journal of Medical Internet Research, 22(8), e22214. https://doi.org/10.2196/22214

  • Mittelstadt, B. D., & Floridi, L. (2016). The Ethics of Big Data: Current and Foreseeable Issues in Biomedical Contexts. Science and Engineering Ethics, 22(2), 303–341. https://doi.org/10.1007/s11948-015-9652-2

  • Muller, S. H. A., Kalkman, S., van Thiel, G. J. M. W., Mostert, M., & van Delden, J. J. M. (2021). The social licence for data-intensive health research: Towards co-creation, public value, and trust. BMC Medical Ethics, 22(1), 110. https://doi.org/10.1186/s12910-021-00677-5

  • Neves, A. L., Poovendran, D., Freise, L., Ghafur, S., Flott, K., Darzi, A., & Mayer, E. K. (2019). Health care professionals’ perspectives on the secondary use of health records to improve quality and safety of care in England: Qualitative study. Journal of Medical Internet Research, 21(9). Scopus. https://doi.org/10.2196/14135

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  • Platt, J. E., Jacobson, P. D., & Kardia, S. L. R. (2018). Public Trust in Health Information Sharing: A Measure of System Trust. Health Services Research, 53(2), 824–845. Scopus. https://doi.org/10.1111/1475-6773.12654

  • Presser, L, M Hruskova, H Rowbottom, and J Kancier. ‘Care.Data and Access to UK Health Records: Patient Privacy and Public Trust.’ Technology Science., 2015

  • Public deliberation in the use of health and care data. One London, The Kings Fund, London Councils, NHS, 2018

  • Scheibner, James, Marcello Ienca, Sotiria Kechagia, Juan Ramon Troncoso-Pastoriza, Jean Louis Raisaro, Jean-Pierre Hubaux, Jacques Fellay, and Effy Vayena. ‘Data Protection and Ethics Requirements for Multisite Research with Health Data: A Comparative Examination of Legislative Governance Frameworks and the Role of Data Protection Technologies†’. Journal of Law and the Biosciences 7, no. 1 (25 July 2020): lsaa010. https://doi.org/10.1093/jlb/lsaa010.

  • Sheehan, M., Friesen, P., Balmer, A., Cheeks, C., Davidson, S., Devereux, J., Findlay, D., Keats-Rohan, K., Lawrence, R., & Shafiq, K. (2020). Trust, trustworthiness and sharing patient data for research. Journal of Medical Ethics. Scopus. https://doi.org/10.1136/medethics-2019-106048

  • Sorbie, A. (2020). Sharing confidential health data for research purposes in the UK: where are ‘publics’ in the public interest? Evidence and Policy, 16(2), 249–265. Scopus. https://doi.org/10.1332/174426419X15578209726839

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  • Stockdale, J., Cassell, J., & Ford, E. (2019). “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 [version 2; referees: 2 approved]. Wellcome Open Research, 3. https://doi.org/10.12688/wellcomeopenres.13531.2

  • Trinidad, M. Grace, Jodyn Platt, and Sharon L. R. Kardia. ‘The Public’s Comfort with Sharing Health Data with Third-Party Commercial Companies’. Humanities and Social Sciences Communications 7, no. 1 (December 2020): 149. https://doi.org/10.1057/s41599-020-00641-5.

  • Tully, M. P., 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). Scopus. https://doi.org/10.2196/jmir.7763

  • Tully, M. P., Hassan, L., Oswald, M., & Ainsworth, J. (2019). Commercial use of health data—A public “trial” by citizens’ jury. Learning Health Systems, 3(4). Scopus. https://doi.org/10.1002/lrh2.10200

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Chapter 6: Data Curation

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  • Ahmadian, L., van Engen-Verheul, M., Bakhshi-Raiez, F., Peek, N., Cornet, R., & de Keizer, N. F. (2011). The role of standardized data and terminological systems in computerized clinical decision support systems: Literature review and survey. International Journal of Medical Informatics, 80(2), 81–93. https://doi.org/10.1016/j.ijmedinf.2010.11.006

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  • Booth, N. (2003). Sharing patient information electronically throughout the NHS. BMJ (Clinical Research Ed.), 327(7407), 114–115. https://doi.org/10.1136/bmj.327.7407.114

  • Bowman, S. (2013). Impact of electronic health record systems on information integrity: Quality and safety implications. Perspectives in Health Information Management, 10, 1c.

  • Campbell, S., & Giadresco, K. (2020). Computer-assisted clinical coding: A narrative review of the literature on its benefits, limitations, implementation and impact on clinical coding professionals. Health Information Management: Journal of the Health Information Management Association of Australia, 49(1), 5–18. https://doi.org/10.1177/1833358319851305

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  • Hekler, E. B., Klasnja, P., Chevance, G., Golaszewski, N. M., Lewis, D., & Sim, I. (2019). Why we need a small data paradigm. BMC Medicine, 17(1). Scopus. https://doi.org/10.1186/s12916-019-1366-x

  • 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(1). Scopus. https://doi.org/10.1186/1471-2288-13-72

  • Hill, S. L., & Small, N. (2006). Differentiating between research, audit, and quality improvement: Governance implications. Clinical Governance: An International Journal, 11(2), 98–107. Scopus. https://doi.org/10.1108/14777270610660475

  • Horn, R., & Kerasidou, A. (2020). Sharing whilst caring: Solidarity and public trust in a data-driven healthcare system. BMC Medical Ethics, 21(1). Scopus. https://doi.org/10.1186/s12910-020-00553-8

  • Howe, N., Giles, E., Newbury-Birch, D., & McColl, E. (2018). Systematic review of participants’ attitudes towards data sharing: A thematic synthesis. Journal of Health Services Research and Policy, 23(2), 123–133. Scopus. https://doi.org/10.1177/1355819617751555

  • Hummel, P., & Braun, M. (2020). Just data? Solidarity and justice in data-driven medicine. Life Sciences, Society and Policy, 16(1). https://doi.org/10.1186/s40504-020-00101-7

  • Ienca, M., Ferretti, A., Hurst, S., Puhan, M., Lovis, C., & Vayena, E. (2018). Considerations for ethics review of big data health research: A scoping review. PloS One, 13(10), e0204937. https://doi.org/10.1371/journal.pone.0204937

  • Leonelli, S. ‘Open Data: Curation Is under-Resourced’. Nature 538, no. 7623 (2016): 41. https://doi.org/10.1038/538041d.

  • ​​Verheij, R. A., Curcin, V., Delaney, B. C., & McGilchrist, M. M. (2018). Possible sources of bias in primary care electronic health record data use and reuse. Journal of Medical Internet Research, 20(5). Scopus. https://doi.org/10.2196/JMIR.9134

  • Waize, Tracy, Sobanna Anandarajah, Neil Dhoul, and Simon De Lusignan. ‘Variation in Clinical Coding Lists in UK General Practice: A Barrier to Consistent Data Entry?’ Journal of Innovation in Health Informatics 15, no. 3 (1 September 2007): 143–50. https://doi.org/10.14236/jhi.v15i3.652.


Chapter 7: Strategy

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  • Cresswell, K. M., Cunningham-Burley, S., & Aziz, S. (2016). Creating a climate that catalyses healthcare innovation in the United Kingdom—Learning lessons from international innovators. Journal of Innovation in Health Informatics, 23(4), 772–782. https://doi.org/10.14236/jhi.v23i4.882

  • Cresswell, K. M., & Sheikh, A. (2016). Catalysing health information technology innovation in the National Health Service. Journal of the Royal Society of Medicine, 109(12), 439–440. https://doi.org/10.1177/0141076816673757

  • Currie, W. L. (2012). Institutional isomorphism and change: The national programme for IT - 10 years on. Journal of Information Technology, 27(3), 236–248. Scopus. https://doi.org/10.1057/jit.2012.18

  • Eason, K., Dent, M., Waterson, P., Tutt, D., & Thornett, A. (2012). Bottom-up and middle-out approaches to electronic patient information systems: A focus on healthcare pathways. Informatics in Primary Care, 20(1), 51–56. Scopus. https://doi.org/10.14236/jhi.v20i1.47

  • Farchi, T., & Salge, T.-O. (2017). Shaping innovation in health care: A content analysis of innovation policies in the English NHS, 1948–2015. Social Science and Medicine, 192, 143–151. Scopus. https://doi.org/10.1016/j.socscimed.2017.09.038

  • Greenhalgh, T., and J. Keen. ‘England’s National Programme for IT’. BMJ 346, no. jun28 2 (28 June 2013): f4130–f4130. https://doi.org/10.1136/bmj.f4130.

  • Justinia, T. (2017). The UK’s National Programme for IT: Why was it dismantled? Health Services Management Research, 30(1), 2–9. Scopus. https://doi.org/10.1177/0951484816662492

  • Nemeth, C., Nunnally, M., O’Connor, M., Klock, P. A., & Cook, R. (2005). Getting to the point: Developing IT for the sharp end of healthcare. Journal of Biomedical Informatics, 38(1), 18–25. https://doi.org/10.1016/j.jbi.2004.11.002

  • Price, C., Green, W., & Suhomlinova, O. (2019). Twenty-five years of national health IT: Exploring strategy, structure, and systems in the English NHS. Journal of the American Medical Informatics Association, 26(3), 188–197. Scopus. https://doi.org/10.1093/jamia/ocy162

  • Takian, A., & Cornford, T. (2012). NHS information: Revolution or evolution? Health Policy and Technology, 1(4), 193–198. Scopus. https://doi.org/10.1016/j.hlpt.2012.10.005

  • Wyatt, D., Lampon, S., & McKevitt, C. (2020). Delivering healthcare’s ‘triple aim’: Electronic health records and the health research participant in the UK National Health Service. Sociology of Health and Illness, 42(6), 1312–1327. Scopus. https://doi.org/10.1111/1467-9566.13101

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