A systematic scoping review of the domains and innovations in secondary uses of digitised health-related data

Ann R R Robertson, Ulugbek Nurmatov, Harpreet S. Sood, Kathrin Cresswell, Pam Smith, Aziz Sheikh


Background: Substantial investments are being made in health ­information ­technology (HIT) based on assumptions that these systems will save costs through increased quality, safety and efficiency of care provision. Whilst ­short-term ­benefits have often proven difficult to demonstrate, there is increasing interest in achieving benefits in the medium and long term through secondary uses of ­HIT-derived data.

Aims: We aimed to describe the range of secondary uses of HIT-derived data in the international literature and identify innovative developments of particular relevance to UK policymakers and managers.

Methods: We searched nine electronic databases to conduct a systematic scoping review of the international literature and augmented this by consulting a range of experts in the field.

Results: Reviewers independently screened 16,806 titles, resulting in 583 ­eligible studies for inclusion. Thematic organisation of reported secondary uses was ­validated during expert consultation (n = 23). A primary division was made between patient-identifiable data and datasets in which individuals were not identified. Secondary uses were then categorised under four domain headings of: i) research; ii) quality and safety of care provision; iii) financial management; and iv) healthcare professional education. We found that innovative developments were most ­evident in research where, in particular, dataset linkage studies offered important ­opportunities for exploitation.

Conclusions: Distinguishing patient-identifiable data from aggregated, de-identified datasets gives greater conceptual clarity in secondary uses of HIT-derived data. Secondary uses research has substantial potential for realising future benefits through generating new medical knowledge from dataset linkage studies, developing precision medicine and enabling cross-sectoral, evidence-based policymaking to benefit population-level well-being.


systematic scoping review; medical informatics; health services research

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Jones SS, Heaton PS, Rudin RS and Schneider EC. Unravelling the IT productivity paradox – lessons for health care. New England Journal of Medicine 2012;366:24. http://dx.doi.org/10.1056/NEJMp1204980. PMid:22693996.

Mandl K and Kohane IS. Escaping the EHR trap – the future of health IT. New England Journal of Medicine 2012;366:24. http://dx.doi.org/10.1056/NEJMp1203102. PMid:22693995.

Black A, Car J, Pagliari C, Anandan C, Cresswell K, Bokun T et al. The Impact of eHealth on the quality and safety of health care: a systematic overview. PLoS Medicine 2011;8:e1000387. http://dx.doi.org/10.1371/journal.pmed.1000387. PMid:21267058; PMCid:PMC3022523.

Sheikh A, Cornford T, Barber N, Robertson A, Cresswell K, Takian A et al. Implementation and adoption of nationwide electronic health records in secondary care in England: final qualitative results from a prospective national evaluation in ‘early adopter’ hospitals. BMJ 2011;343:d6054. http://dx.doi.org/10.1136/bmj.d6054. PMid:22006942; PMCid:PMC3195310.

Cresswell K and Sheikh A. Effective integration of technology into health care needs adequate attention to sociotechnical processes, time and a dose of reality. Journal of the American Medical Informatics Association 2012;307:2255–2255.

Avery A, Rodgers S, Cantrill JA, Armstrong S, Elliott R, Howard R et al. PINCER trial: a cluster randomized trial comparing the effectiveness and cost-effectiveness of a pharmacist-led IT-based intervention with simple feedback in reducing rates of clinically important errors in medicines management in general practices. Lancet 2012;379(9823):p1310–1319; http://dx.doi.org/10.1016/S0140-6736(11)61817-5.

Hippisley-Cox J, Coupland C, Vinogradova Y, Robson J, Minhas R, Sheikh A et al. Predicting cardiovascular risk in England and Wales: prospective derivation and ­validation of QRISK2. BMJ 2008;336:1475–1482. http://dx.doi.org/10.1136/bmj.39609.449676.25. PMid:18573856; PMCid:PMC2440904.

Lidegaard Ø, Løkkegaard E, Jensen A, Skovlund CW and Keiding N. Thrombotic stroke and myocardial infarction with hormonal contraception. New England Journal of Medicine 2012;366:2257–66. http://dx.doi.org/10.1056/NEJMoa1111840. PMid:22693997.

Cresswell K and Sheikh A. Electronic health record technology. Journal of the American Medical Association 2012 Jun 6;307(21):2255–6. http://dx.doi.org/10.1001/jama.2012.3520. PMid:22706825.

American Medical Informatics Association. Secondary uses and re-uses of healthcare data: taxonomy for policy formulation and planning. Available from: http://www.amia.org/sites/amia.org/files/2007-Policy-Meeting-amia-taxonomy-Secondary-Data-Use-Version.pdf. Accessed 15 January 2013.

Arksey H and O’Malley L. Scoping studies: towards a methodological framework. International Journal of Social Research Methodology 2005;8(1):19–32. http://dx.doi.org/10.1080/1364557032000119616.

Levac D, Colquhoun H and O’Brien KK. Scoping studies: advancing the methodology. Implementation Science 2010,5:69. http://dx.doi.org/10.1186/1748-5908-5-69. PMid:20854677; PMCid:PMC2954944.

Braun V and Clarke V. Using thematic analysis in psychology. Qualitative Research in Psychology 2006;3(2):77–101. http://dx.doi.org/10.1191/1478088706qp063oa.

Arendrup M C, Bruun B, Christensen JJ, Fuursted K, Johansen HK, Kjaeldgaard P et al. National surveillance of fungemia in Denmark (2004 to 2009). Journal of Clinical Microbiology 2011;49 (1):325–334. http://dx.doi.org/10.1128/JCM.01811-10. PMid:20980569; PMCid:PMC3020479.

Colvin L., Slack-Smith L, Stanley FJ and Bower C. Are women with major depression in pregnancy identifiable in population health data? BMC Pregnancy Childbirth 2013;13:63. http://dx.doi.org/10.1186/1471-2393-13-63. PMid:23497210; PMCid:PMC3602106.

Schreiweis B, Gruber G and Bergh B. First experiences in implementing a software-based support for patient recruitment at Heidelberg university hospital. Studies in Health Technology and Informatics 2012;180:1147–1149. PMid:22874382.

Haley, V. B., C. van Antwerpen, et al. Use of administrative data in efficient auditing of hospital- acquired surgical site infections, New York State 2009–2010. Infection Control and Hospital Epidemiology 2012;33(6): 565–571. http://dx.doi.org/10.1086/665710. PMid:22561711.

Anderson, M, Zito D and Kongable G. Benchmarking glucose results through automation: the 2009 Remote Automated Laboratory System Report. Journal of Diabetes Science and Technology 2012;4(6):1507–1513. http://dx.doi.org/10.1177/193229681000400627.

Bottacchi E, Corso G, Tosi P, Morosini MV, De Filippis G, Santoni L et al. The cost of first-ever stroke in Valle d’Aosta, Italy: linking clinical registries and administrative data. BMC Health Services Research 2012;12:372. http://dx.doi.org/10.1186/1472-6963-12-372. PMid:23110322; PMCid:PMC3507771.

Klein D, Staples J, Pittman C and Stepanko C. Using electronic clinical practice audits as needs assessment to produce effective continuing medical education programming. Medical Teacher 2012;34(2):151–154. http://dx.doi.org/10.3109/0142159X.2012.644826. PMid:22288993.

Roos NP, Black CD, Frohlich N, Decoster C, Cohen MM, Tataryn DJ et al. A population-based health information system. Medical Care1995;33: DS13–20. http://dx.doi.org/10.1097/00005650-199512001-00005. PMid:7500666.

Baldwin JA. The Oxford Record Linkage Study as a medical information system. Journal of Epidemiology and Preventive Medicine 1972;65:237–9.

Kendrick S and Clarke J. The Scottish Record Linkage System. Health Bull1993;51(2):72.

Kurland LT and Molgaard CA. The patient record in ­epidemiology. Scientific American 1981;245:54–63. http://dx.doi.org/10.1038/scientificamerican1081-54.

British Columbia Centre for Health Services and Policy Research. BC Linked Health Database. Available at: http://www.chspr.ubc.ca/data. Accessed October 2007.

Holman CD, Bass AJ, Rouse IL and Hobbs MS. ­Population-based linkage of health records in Western Australia: development of a health services research linked database. Australian and New Zealand Journal of Public Health1999;23:453-9. http://dx.doi.org/10.1111/j.1467-842X.1999.tb01297.x. PMid:10575763.

Mackay D, Haw S, Ayres MD, Fischbacher C and Pell JP. Smoke-free legislation and hospitalizations for childhood asthma. New England Journal of Medicine2010;363:1139–1145. http://dx.doi.org/10.1056/NEJMoa1002861.

Risgaard B, Nielsen JB, Jabbari R, Haunsø S, Holst AG, Winkel BG et al. Prior myocardial infarction in the young: predisposes to a high relative risk but low absolute risk of a sudden cardiac death. Europace 2013;15(1):48–54. http://dx.doi.org/10.1093/europace/eus190. PMid:22753866.

Alan J, Burmas M, Preen D and Pfaff J. Inpatient hospital use in the first year after release from prison: a Western Australian population-based record linkage study. Australian and New Zealand journal of Public Health 2011;35(3):264–269. http://dx.doi.org/10.1111/j.1753-6405.2011.00704.x. PMid:21627727.

Villanueva K, Pereira G, Knuiman M, Bull F, Wood L, Christian H et al. The impact of the built environment on health across the life course: design of a cross-sectional data linkage study. BMJ Open 2013;3(1):e002482. http://dx.doi.org/10.1136/bmjopen-2012-002482.

Evans J, Donnelly L, Emslie-Smith A, Alessi D and Morris A. Metformin and reduced risk of cancer in diabetic patients. BMJ 2005;330:1304–5. http://dx.doi.org/10.1136/bmj.38415. 708634.F7. PMid:15849206; PMCid:PMC558205.

Thomas K, Martin R, Davies N, Metcalfe C, Windmeijer F and Gunnell D. Smoking cessation treatment and risk of depression, suicide, and self-harm in the Clinical Practice Research Datalink: prospective cohort study. BMJ 2013;347. doi: http://dx.doi.org/10.1136/bmj.f5704.

Fone D, Dunstan F, White J, Morgan J, Fry R, Rodgers S et al. Change in alcohol outlet density and alcohol-related harm to public health (CHALICE). BMC Public Health 2012;12:428. http://dx.doi.org/10.1186/1471-2458-12-428. PMid:22691534; PMCid:PMC3409073.

Mackay D, Haw S, Ayres J, Fischbacher C and Pell J. ­Smoke-free Legislation and Hospitalizations for Childhood Asthma. New England Journal of Medicine 2010;363:1139–45. http://dx.doi.org/10.1056/NEJMoa1002861. PMid:20843248.

The Farr Institute. New job opportunities within Farr London. http://www.farrinstitute.org/1_about.html. Accessed 07 July 2014.

The Administrative Data Research Network. http://adrn.ac.uk. Accessed 21 July 2014.

DOI: http://dx.doi.org/10.14236/jhi.v23i3.841


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