Skip to main content
Log in

Surgical patient registries: scoping study of challenges and solutions

Journal of Public Health Policy Aims and scope Submit manuscript

Abstract

Patient surgical registries are essential tools for public health specialists, creating research opportunities through linkage of registry data with healthcare outcomes. However, little is known regarding data error sources in the management of surgical registries. In June 2022, we undertook a scoping study of the empirical literature including publications selected from the PUBMED and EMBASE databases. We selected 48 studies focussing on shared experiences centred around developing surgical patient registries. We identified seven types of data specific challenges, grouped in three categories- data capture, data analysis and result dissemination. Most studies underlined the risk for a high volume of missing data, non-uniform geographic representation, inclusion biases, inappropriate coding, as well as variations in analysis reporting and limitations related to the statistical analysis. Finally, to expand data usability, we discussed cost-effective ways of addressing these limitations, by citing aspects from the protocols followed by established exemplary registries.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1

References

  1. Wilcox N, McNeil JJ. Clinical quality registries have the potential to drive improvements in the appropriateness of care. Med J Aust. 2016;205(10):S27–9. https://doi.org/10.5694/mja15.00921.

    Article  Google Scholar 

  2. Gliklich RE, Leavy MB. Patient Registries. In: Gliklich RE, Leavy MB, Dreyer NA, editors. Registries for evaluating patient outcomes: a user’s guide. 4th ed. Rockville: Agency for Healthcare Research and Quality; 2020. p. 10–20.

    Chapter  Google Scholar 

  3. Stey AM, Russell MM, Ko CY, Sacks GD, Dawes AJ, Gibbons MM. Clinical registries and quality measurement in surgery: a systematic review. Surgery. 2015;157(2):381–95. https://doi.org/10.1016/j.surg.2014.08.097.

    Article  Google Scholar 

  4. Mandavia R, Knight A, Phillips J, Mossialos E, Littlejohns P, Schilder A. What are the essential features of a successful surgical registry? a systematic review. BMJ Open. 2017;7(9):4–7. https://doi.org/10.1136/bmjopen-2017-017373.

    Article  Google Scholar 

  5. Tricco AC, Lillie E, Zarin W, et al. PRISMA extension for scoping reviews (PRISMA-ScR): checklist and explanation. Ann Intern Med. 2018;169:467–73. https://doi.org/10.7326/M18-0850.

    Article  Google Scholar 

  6. Open Science Framework Registered Project. https://osf.io/ucybg/?view_only=58b83c6b923e46859835e1495de5fc96. Accessed 11 Aug 2023.

  7. Boulton C, Harrison C, Wilton T, et al. Implementing large-scale data quality validation in a national arthroplasty registry to improve compliance: the National Joint Registry data quality audit programme. Bone Jt Open. 2022;3(9):716–25. https://doi.org/10.1302/2633-1462.39.BJO-2022-0051.R1.

    Article  Google Scholar 

  8. Venermo M, Lees T. International Vascunet validation of the Swedvasc Registry. Eur J Vasc Endovasc Surg. 2015;50:802–8. https://doi.org/10.1016/j.ejvs.2015.07.021.

    Article  Google Scholar 

  9. National Institute for Cardiovascular Outcomes Research (NICOR). National Data Opt Out exemption granted for NCAP. https://www.nicor.org.uk/2022/07/28/national-data-opt-out-exemption-granted-for-ncap-and-tavi-data/. Accessed 4 Mar 2023.

  10. National Cardiac Audit Programme (NCAP) 2022 Report- The Heart in Lockdown. https://www.nicor.org.uk/wp-content/uploads/2022/06/NCAP-Aggregate_2022-FINAL.pdf. Accessed 5 Mar 2023.

  11. Noonan VK, Kwon BK, Soril L, et al. The Rick Hansen Spinal Cord Injury Registry (RHSCIR): a national patient-registry. Spinal Cord. 2012;50:22–7. https://doi.org/10.1038/sc.2011.109.

    Article  Google Scholar 

  12. Evangelista A, Isselbacher EM, Bossone E, et al. Insights from the international registry of acute aortic dissection: A 20-year experience of collaborative clinical research. Circulation. 2018;137(17):1846–60. https://doi.org/10.1161/CIRCULATIONAHA.117.031264.

    Article  Google Scholar 

  13. Kuo TM, Mobley LR. How generalizable are the SEER registries to the cancer populations of the USA? Cancer Causes Control. 2016;27(9):1117–26. https://doi.org/10.1007/s10552-016-0790-x.

    Article  Google Scholar 

  14. Roder D, Karapetis CS, Wattchow D, et al. Metastatic colorectal cancer treatment and survival: the experience of major public hospitals in South Australia over three decades. Asian Pac J Cancer Prev. 2015;16(14):5923–31. https://doi.org/10.7314/APJCP.2015.16.14.5923.

    Article  Google Scholar 

  15. Pruthi R, Curnow E, Roderick P, Ravanan R. UK renal registry 17th annual report: Chapter 11 centre Variation in access to renal transplantation in the UK (2008–2010). Nephron. 2015;129:247–56. https://doi.org/10.1159/000370281.

    Article  Google Scholar 

  16. Parker AS, Eckel-Passow JE, Serie D, et al. Higher expression of topoisomerase II alpha is an independent marker of increased risk of cancer-specific death in patients with clear cell renal cell carcinoma. Eur Urol. 2014;66(5):929–35. https://doi.org/10.1016/j.eururo.2013.12.017.

    Article  Google Scholar 

  17. de Steur WO, Henneman D, Allum WH, et al. Common data items in seven European oesophagogastric cancer surgery registries: towards a European Upper GI cancer audit (EURECCA Upper GI). Eur J Surg Oncol. 2014;40(3):325–9. https://doi.org/10.1016/j.ejso.2013.11.021.

    Article  Google Scholar 

  18. Head SJ, Howell NJ, Osnabrugge RLJ, et al. The European Association for Cardio-Thoracic Surgery (EACTS) database: an introduction. Eur J Cardio-Thoracic Surg. 2013;44(3):e175–80. https://doi.org/10.1093/ejcts/ezt303.

    Article  Google Scholar 

  19. Goode SD, Cleveland TJ, Gaines PA. United Kingdom carotid artery stent registry: short- and long-term outcomes. Cardiovasc Intervent Radiol. 2013;36(5):1221–31. https://doi.org/10.1007/s00270-013-0573-7.

    Article  Google Scholar 

  20. Fransvea P, Costa G, Massa G, Frezza B, Mercantini P, Baiducci G. Non-operative management of blunt splenic injury: is it really so extensively feasible? A critical appraisal of a single-center experience. Pan Afr Med J. 2019;32:1–14. https://doi.org/10.11604/pamj.2019.32.52.15022.

    Article  Google Scholar 

  21. Miller C, Frood R, See TC, Hammond CJ. British Society of Interventional Radiology Iliac Angioplasty and Stent Registry: fourth report on an additional 8,294 procedures. Clin Radiol. 2019;74(6):429–34. https://doi.org/10.1016/j.crad.2019.01.026.

    Article  Google Scholar 

  22. Kute VB, Patel HV, Shah PR, et al. Impact of single centre kidney paired donation transplantation to increase donor pool in India: a cohort study. Transpl Int. 2017;30(7):679–88. https://doi.org/10.1111/tri.12956.

    Article  Google Scholar 

  23. Patil D, Lanjewar C, Vaggar G, et al. Appropriateness of elective percutaneous coronary intervention and impact of government health insurance scheme—a tertiary centre experience from Western India. Indian Heart J. 2017;69(5):600–6. https://doi.org/10.1016/j.ihj.2016.12.018.

    Article  Google Scholar 

  24. Lim BL, Teo LT, Chiu MT, Asinas-Tan ML, Seow E. Traumatic diaphragmatic injuries: a retrospective review of a 12-year experience at a tertiary trauma centre. Singapore Med J. 2017;58(10):595–600. https://doi.org/10.11622/smedj.2016185.

    Article  Google Scholar 

  25. Twiss E, Krijnen P, Schipper I. Accuracy and reliability of injury coding in the national Dutch Trauma Registry. Int J Qual Heal Care. 2021;33(1):1–8. https://doi.org/10.1093/intqhc/mzab041.

    Article  Google Scholar 

  26. Steuer CE, Behera M, Kim S, et al. Atypical carcinoid tumor of the lung: a surveillance, epidemiology, and end results database analysis. J Thorac Oncol. 2015;10(3):479–85. https://doi.org/10.1097/JTO.0000000000000419.

    Article  Google Scholar 

  27. Elson DW, Dawson M, Wilson C, Risebury M, Wilson A. The UK Knee Osteotomy Registry (UKKOR). Knee. 2015;22(1):1–3. https://doi.org/10.1016/j.knee.2014.10.004.

    Article  Google Scholar 

  28. Hye RJ, Inui TS, Anthony FF, et al. A multiregional registry experience using an electronic medical record to optimize data capture for longitudinal outcomes in endovascular abdominal aortic aneurysm repair. J Vasc Surg. 2015;61(5):1160–7. https://doi.org/10.1016/j.jvs.2014.12.055.

    Article  Google Scholar 

  29. Hickey GL, Cosgriff R, Grant SW, et al. A technical review of the United Kingdom national adult cardiac surgery governance analysis 2008–11. Eur J Cardio-thoracic Surg. 2014;45(2):225–33. https://doi.org/10.1093/ejcts/ezt476.

    Article  Google Scholar 

  30. Ludman PF. The UK transcatheter aortic valve implantation registry; one of the suite of registries hosted by the National Institute for Cardiovascular Outcomes Research (NICOR). Heart. 2012;98(24):1787–9. https://doi.org/10.1136/heartjnl-2012-302534.

    Article  Google Scholar 

  31. Horrocks M. Vascular Surgery. Getting It Right First Time (GIRFT) Programme National Specialty Report- March 2018. https://gettingitrightfirsttime.co.uk/wp-content/uploads/2018/02/GIRFT_Vascular_Surgery_Report-March_2018.pdf. Accessed 4 Mar 2023.

  32. Roy DA, Schaefer U, Guetta V, et al. Transcatheter aortic valve implantation for pure severe native aortic valve regurgitation. J Am Coll Cardiol. 2013;61(15):1577–84. https://doi.org/10.1016/j.jacc.2013.01.018.

    Article  Google Scholar 

  33. Oberkircher L, Ruchholtz S, Rommens PM, Hofmann A, Bücking B, Krüger A. Osteoporotic pelvic fractures. Dtsch Arztebl Int. 2018;115(5):70–80. https://doi.org/10.3238/arztebl.2018.0070.

    Article  Google Scholar 

  34. Ben-Shlomo Y, Blom A, Boulton C, et al. The National Joint Registry 19th Annual Report 2022. https://www.ncbi.nlm.nih.gov/books/NBK587525/. Accessed 2 Mar 2023.

  35. Healthcare Quality Improvement Partnership. E-learning Introduction to Quality Improvement for Patients and the Public. https://elearning.hqip.org.uk/introduction-to-qi/. Accessed 2 Mar 2023.

  36. National Gynae-Oncology Registry. Ovarian Cancer Registry—The OvCR Annual Report July 2020–December 2021. https://ngor.org.au/wp-content/uploads/2018/05/NGOR_AnnualReport_2021_F_WEB.pdf. Accessed 10 Mar 2023

  37. Valente DS, Kaye AE, Simmons CJ, Zanella RK, Pannucci CJ. Leveraging the tracking operations and outcomes for plastic surgeons database for plastic surgery research: a “how-to” guide. Plast Reconstr Surg. 2021;148(5):735e–41e. https://doi.org/10.1097/PRS.0000000000008483.

    Article  Google Scholar 

  38. Harting MT, Lally KP. The congenital diaphragmatic Hernia study group registry update. Semin Fetal Neonatal Med. 2014;19(6):370–5. https://doi.org/10.1016/j.siny.2014.09.004.

    Article  Google Scholar 

  39. Schmalbach CE, Brereton J, Bowman C, Denneny JC 3rd. American academy of Otolaryngology-Head and Neck Surgery/Foundation reg-ent Registry: purpose, properties, and priorities. Otolaryngol Head Neck Surg. 2021;164(5):964–71. https://doi.org/10.1177/0194599820984135.

    Article  Google Scholar 

  40. Punnen S, Cowan JE, Chan JM, Carroll PR, Cooperberg MR. Long-term health-related quality of life after primary treatment for localized prostate cancer: results from the CaPSURE registry. Eur Urol. 2015;68(4):600–8. https://doi.org/10.1016/j.eururo.2014.08.074.

    Article  Google Scholar 

  41. Gabr A, De Medici A, Haddad F. The National Ligament Registry: The Fifth Annual Report (2019). https://www.uknlr.co.uk/pdf/annual-report-2019.pdf. Accessed 5 Mar 2023

  42. Sablinskis M, Sablinskis K, Skride A. Pulmonary endarterectomy in Latvia: a national experience. Medicina. 2019;55(1):18. https://doi.org/10.3390/medicina55010018.

    Article  Google Scholar 

  43. Jones H, Moran B, Crane S, Hompes R, Cunningham C. The LOREC APE registry: operative technique, oncological outcome and perineal wound healing after abdominoperineal excision. Color Dis. 2017;19(2):172–80. https://doi.org/10.1111/codi.13423.

    Article  Google Scholar 

  44. Franklin PD, Harrold L, Ayers DC. Incorporating patient-reported outcomes in total joint arthroplasty registries: challenges and opportunities. Clin Orthop Relat Res. 2013;471(11):3482–8. https://doi.org/10.1007/s11999-013-3193-2.

    Article  Google Scholar 

  45. Sessler DI. Big Data—and its contributions to peri-operative medicine. Anaesthesia. 2014;69(2):100–5. https://doi.org/10.1111/anae.12537.

    Article  Google Scholar 

  46. Hopkins J, Welbourn R. The importance of national registries/databases in metabolic surgery: the UK experience. Surg Obes Relat Dis. 2016;12(6):1178–85. https://doi.org/10.1016/j.soard.2016.02.030.

    Article  Google Scholar 

  47. Russo MJ, McCabe JM, Thourani VH, et al. Case volume and outcomes after TAVR with balloon-expandable prostheses: insights from TVT registry. J Am Coll Cardiol. 2019;73(4):427–40. https://doi.org/10.1016/j.jacc.2018.11.031.

    Article  Google Scholar 

  48. Divecha HM, Siddique I, Breakwell LM, Millner PA. Complications in spinal deformity surgery in the United Kingdom: 5-year results of the annual British Scoliosis Society National Audit of Morbidity and Mortality. Eur Spine J. 2014;23(Suppl 1):55–60. https://doi.org/10.1007/s00586-014-3197-y.

    Article  Google Scholar 

  49. Armitage JN, Irving SO, Burgess NA. Percutaneous nephrolithotomy in the United Kingdom: results of a prospective data registry. Eur Urol. 2012;61(6):1188–93. https://doi.org/10.1016/j.eururo.2012.01.003.

    Article  Google Scholar 

  50. Butler AE, Puligandla PS, Skarsgard ED. The Canadian Pediatric Surgery Network (CAPSNet): lessons learned from a national registry devoted to the study of congenital diaphragmatic hernia and gastroschisis. Eur J Pediatr Surg. 2015;25(6):474–80. https://doi.org/10.1055/s-0035-1569477.

    Article  Google Scholar 

  51. Parker SL, McGirt MJ, Bekelis K, Holland CM, Davies J, Devin CJ, Atkins T, Knightly J, Groman R, Zyung I, Asher AL. The National neurosurgery quality and outcomes database qualified clinical data registry: 2015 measure specifications and rationale. Neurosurg Focus. 2015;39(6):E4. https://doi.org/10.3171/2015.9.FOCUS15355.

    Article  Google Scholar 

Download references

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Andreea Madalina Serban.

Ethics declarations

Conflict of interest

On behalf of all authors, the corresponding author states that there is no conflict of interest.

Additional information

Publisher's Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Supplementary Information

Below is the link to the electronic supplementary material.

Supplementary file1 (DOCX 408 KB)

Rights and permissions

Springer Nature or its licensor (e.g. a society or other partner) holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Serban, A.M., Ionescu, N.S. Surgical patient registries: scoping study of challenges and solutions. J Public Health Pol 44, 523–534 (2023). https://doi.org/10.1057/s41271-023-00442-5

Download citation

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1057/s41271-023-00442-5

Keywords

Navigation