CC BY-NC-ND 4.0 · Appl Clin Inform 2023; 14(02): 326-336
DOI: 10.1055/s-0043-1767681
Research Article

Using Existing Clinical Information Models for Dutch Quality Registries to Reuse Data and Follow COUMT Paradigm

Maike H. J. Schepens
1   Cirka BV, Healthcare Strategy and Innovation, Zeist, The Netherlands
2   Department of Biomedical Data Sciences, LUMC, Leiden, The Netherlands
,
Annemarie C. Trompert
3   Dutch Institute for Clinical Auditing, Leiden, The Netherlands
,
Miranda L. van Hooff
4   Department of Orthopedics, Radboud UMC, Nijmegen, The Netherlands
5   Department of Orthopedics, Sint Maartenskliniek, Nijmegen, The Netherlands
,
Erik van der Velde
6   Dutch Association of Medical Specialists, Utrecht, The Netherlands
7   Zorgverbeteraars, Healthcare IT Consulting, Roden, The Netherlands
,
Marjon Kallewaard
6   Dutch Association of Medical Specialists, Utrecht, The Netherlands
,
Iris J. A. M. Verberk-Jonkers
6   Dutch Association of Medical Specialists, Utrecht, The Netherlands
8   Department of Nephrology, Maasstad Hospital, Rotterdam, The Netherlands
,
Huib A. Cense
9   Department of Surgery, Rode Kruis Hospital, Beverwijk, The Netherlands
10   Department of Health System Innovation. Faculty of Economics and Business, Groningen University. Groningen, The Netherlands
,
Diederik M. Somford
11   Department of Urology, Canisius Wilhelmina Hospital, Nijmegen, The Netherlands
,
Sjoerd Repping
12   Amsterdam University Medical Center, University of Amsterdam, Amsterdam, The Netherlands
,
Selma C. Tromp
6   Dutch Association of Medical Specialists, Utrecht, The Netherlands
13   Department of Neurology, Leiden University Medical Center, Leiden, The Netherlands
,
Michel W. J. M. Wouters
2   Department of Biomedical Data Sciences, LUMC, Leiden, The Netherlands
13   Department of Neurology, Leiden University Medical Center, Leiden, The Netherlands
14   Department of Surgical Oncology, Netherlands Cancer Institute, Amsterdam, the Netherlands
› Author Affiliations
Funding The SKMS Program of the Dutch Association of Medical Specialists (Federatie Medisch Specialisten) funded the step-based approach executed with 31 NQRs.

Abstract

Background Reuse of health care data for various purposes, such as the care process, for quality measurement, research, and finance, will become increasingly important in the future; therefore, “Collect Once Use Many Times” (COUMT). Clinical information models (CIMs) can be used for content standardization. Data collection for national quality registries (NQRs) often requires manual data entry or batch processing. Preferably, NQRs collect required data by extracting data recorded during the health care process and stored in the electronic health record.

Objectives The first objective of this study was to analyze the level of coverage of data elements in NQRs with developed Dutch CIMs (DCIMs). The second objective was to analyze the most predominant DCIMs, both in terms of the coverage of data elements as well as in their prevalence across existing NQRs.

Methods For the first objective, a mapping method was used which consisted of six steps, ranging from a description of the clinical pathway to a detailed mapping of data elements. For the second objective, the total number of data elements that matched with a specific DCIM was counted and divided by the total number of evaluated data elements.

Results An average of 83.0% (standard deviation: 11.8%) of data elements in studied NQRs could be mapped to existing DCIMs . In total, 5 out of 100 DCIMs were needed to map 48.6% of the data elements.

Conclusion This study substantiates the potential of using existing DCIMs for data collection in Dutch NQRs and gives direction to further implementation of DCIMs. The developed method is applicable to other domains. For NQRs, implementation should start with the five DCIMs that are most prevalently used in the NQRs. Furthermore, a national agreement on the leading principle of COUMT for the use and implementation for DCIMs and (inter)national code lists is needed.

Authors' Contributions

M.S., A.T., and E.v.d.V. developed the study design and the mapping method. M.S. executed the analysis for this manuscript. M.v.H., M.W., and S.R. supervised the analyses for this manuscript. M.S., A.T., M.v.H., S.R., and M.W. contributed to the draft of the manuscript. All authors contributed to the manuscript review and editing.


Protection of Human and Animal Subjects

No human subjects were involved.


Supplementary Material



Publication History

Received: 14 October 2022

Accepted: 02 January 2023

Article published online:
03 May 2023

© 2023. The Author(s). This is an open access article published by Thieme under the terms of the Creative Commons Attribution-NonDerivative-NonCommercial License, permitting copying and reproduction so long as the original work is given appropriate credit. Contents may not be used for commercial purposes, or adapted, remixed, transformed or built upon. (https://creativecommons.org/licenses/by-nc-nd/4.0/)

Georg Thieme Verlag KG
Rüdigerstraße 14, 70469 Stuttgart, Germany

 
  • References

  • 1 Emilsson L, Lindahl B, Köster M, Lambe M, Ludvigsson JF. Review of 103 Swedish healthcare quality registries. J Intern Med 2015; 277 (01) 94-136
  • 2 Hoeijmakers F, Beck N, Wouters MWJM, Prins HA, Steup WH. National quality registries: how to improve the quality of data?. J Thorac Dis 2018; 10 (Suppl. 29) S3490-S3499
  • 3 Joukes E, Cornet R, de Keizer N, de Bruijne M. Collect once, use many times: end-users don't practice what they preach. Stud Health Technol Inform 2016; 228: 252-256
  • 4 Goossen WTF. Detailed clinical models: representing knowledge, data and semantics in healthcare information technology. Healthc Inform Res 2014; 20 (03) 163-172
  • 5 Oniki TA, Coyle JF, Parker CG, Huff SM. Lessons learned in detailed clinical modeling at Intermountain Healthcare. J Am Med Inform Assoc 2014; 21 (06) 1076-1081
  • 6 Moreno-Conde A, Moner D, Cruz WD. et al. Clinical information modeling processes for semantic interoperability of electronic health records: systematic review and inductive analysis. J Am Med Inform Assoc 2015; 22 (04) 925-934
  • 7 Goossen W, Goossen-Baremans A, van der Zel M. Detailed clinical models: a review. Healthc Inform Res 2010; 16 (04) 201-214
  • 8 Zorginformatiebouwstenen. Accessed November 16, 2021 at: https://www.registratieaandebron.nl/zorginformatiebouwstenen
  • 9 World Health Organization. Guidelines on the European patient summary dataset. Eurohealth 2014; 20 (01) 25-28 Accessed December 9, 2022 at: https://apps.who.int/iris/handle/10665/332849
  • 10 Patient Summary BGZ. Accessed April 5, 2022 at: https://www.nictiz.nl/patient-summary-bgz/
  • 11 Zib probleem. Accessed August 18, 2022 at: https://zibs.nl/wiki/Probleem-v4.4(2020NL)
  • 12 Bestuurlijk akkoord medisch-specialistische zorg 2019–2022. Accessed October 1, 2021 at: https://eerstekamer.nl/9370000/1/j4nvjlhjvvt9eu4_j9vvkfvj6b325az/vkoyotm271z2
  • 13 Doeboek kwaliteitsregistraties. Accessed October 1, 2021 at: https://www.registratieaandebron.nl/files/Doeboek_kwaliteitsregistraties_versie_1.0.pdf
  • 14 Lawal AK, Rotter T, Kinsman L. et al. What is a clinical pathway? Refinement of an operational definition to identify clinical pathway studies for a Cochrane systematic review. BMC Med 2016; 14: 35
  • 15 ZIRA. Accessed October 11, 2021 at: https://www.nictiz.nl/standaardisatie/referentiedomeinmodellen/zira
  • 16 van Bommel AC, Spronk PE, Vrancken Peeters MT. et al; NABON Breast Cancer Audit. Clinical auditing as an instrument for quality improvement in breast cancer care in the Netherlands: the national NABON Breast Cancer Audit. J Surg Oncol 2017; 115 (03) 243-249
  • 17 Van Leersum NJ, Snijders HS, Henneman D. et al; Dutch Surgical Colorectal Cancer Audit Group. The Dutch surgical colorectal audit. Eur J Surg Oncol 2013; 39 (10) 1063-1070
  • 18 Busweiler LA, Wijnhoven BP, van Berge Henegouwen MI. et al; Dutch Upper Gastrointestinal Cancer Audit (DUCA) Group. Early outcomes from the Dutch Upper Gastrointestinal Cancer Audit. Br J Surg 2016; 103 (13) 1855-1863
  • 19 Beck N, Hoeijmakers F, Wiegman EM. et al. Lessons learned from the Dutch Institute for Clinical Auditing: the Dutch model for quality assurance in lung cancer treatment. J Thorac Dis 2018; 10 (Suppl. 29) S3472-S3485
  • 20 Ten Berge M, Beck N, Heineman DJ. et al. Dutch lung surgery audit: a national audit comprising lung and thoracic surgery patients. Ann Thorac Surg 2018; 106 (02) 390-397
  • 21 Ismail RK, Schramel FMNH, van Dartel M. et al; Dutch Lung Cancer Audit Scientific Committee. The Dutch Lung Cancer Audit: nationwide quality of care evaluation of lung cancer patients. Lung Cancer 2020; 149: 68-77
  • 22 Jochems A, Schouwenburg MG, Leeneman B. et al. Dutch Melanoma Treatment Registry: quality assurance in the care of patients with metastatic melanoma in the Netherlands. Eur J Cancer 2017; 72: 156-165
  • 23 van Rijssen LB, Koerkamp BG, Zwart MJ. et al; Dutch Pancreatic Cancer Group. Nationwide prospective audit of pancreatic surgery: design, accuracy, and outcomes of the Dutch Pancreatic Cancer Audit. HPB (Oxford) 2017; 19 (10) 919-926
  • 24 Alberga AJ, Karthaus EG, Wilschut JA. et al. Treatment outcome trends for non-ruptured abdominal aortic aneurysms: a nationwide prospective cohort study. Eur J Vasc Endovasc Surg 2022; 10: S1078-S5884
  • 25 Karthaus EG, Vahl A, Kuhrij LS. et al; Dutch Society of Vascular Surgery, Steering Committee of the Dutch Audit for Carotid Interventions, Dutch Institute for Clinical Auditing. The Dutch audit of carotid interventions: transparency in quality of carotid endarterectomy in symptomatic patients in the Netherlands. Eur J Vasc Endovasc Surg 2018; 56 (04) 476-485
  • 26 Poelemeijer YQM, Liem RSL, Nienhuijs SW. A Dutch nationwide bariatric quality registry: DATO. Obes Surg 2018; 28 (06) 1602-1610
  • 27 Kuhrij LS, Wouters MW, van den Berg-Vos RM, de Leeuw FE, Nederkoorn PJ. The Dutch Acute Stroke Audit: benchmarking acute stroke care in the Netherlands. Eur Stroke J 2018; 3 (04) 361-368
  • 28 de Neree Tot Babberich MPM, Ledeboer M, van Leerdam ME. et al. Dutch Gastrointestinal Endoscopy Audit: automated extraction of colonoscopy data for quality assessment and improvement. Gastrointest Endosc 2020; 92 (01) 154.e1-162.e1
  • 29 Spronk PER, Becherer BE, Hommes J. et al. How to improve patient safety and quality of care in breast implant surgery? First outcomes from the Dutch Breast Implant Registry (2015-2017). J Plast Reconstr Aesthet Surg 2019; 72 (10) 1607-1615
  • 30 Voeten SC, Arends AJ, Wouters MWJM. et al; Dutch Hip Fracture Audit (DHFA) Group. The Dutch Hip Fracture Audit: evaluation of the quality of multidisciplinary hip fracture care in the Netherlands. Arch Osteoporos 2019; 14 (01) 28
  • 31 SNOMED CT. Accessed November 19, 2021 at: https://www.snomed.org
  • 32 LOINC. Accessed November 19, 2021 at: https://loinc.org
  • 33 Schlegel DR, Ficheur G. Secondary use of patient data: review of the literature published in 2016. Yearb Med Inform 2017; 26 (01) 68-71
  • 34 Ingvar M, Blom MC, Winsnes C, Robinson G, Vanfleteren L, Huff S. On the annotation of health care pathways to allow the application of care-plans that generate data for multiple purposes. Front Digit Health 2021; 3: 688218
  • 35 Ryan PB, Stang PE, Overhage JM. et al. A comparison of the empirical performance of methods for a risk identification system. Drug Saf 2013; 36 (Suppl. 01) S143-S158
  • 36 OMOP – OHDSI. Accessed November 19, 2021 at: https://ohdsi.org/omop/
  • 37 Hripcsak G, Duke JD, Shah NH. et al. Observational Health Data Sciences and Informatics (OHDSI): opportunities for observational researchers. Stud Health Technol Inform 2015; 216: 574-578
  • 38 OHDSI. Accessed November 19, 2021 at: https://athena.ohdsi.org
  • 39 TEHDAS. Report on secondary use of health data through European case studies. 2022. Accessed December 9, 2022 at: https://tehdas.eu/app/uploads/2022/08/tehdas-report-on-secondary-use-of-health-data-through-european-case-studies-.pdf
  • 40 Wilkinson MD, Dumontier M, Aalbersberg IJ. et al. The FAIR Guiding Principles for scientific data management and stewardship. Sci Data 2016; 3: 160018
  • 41 OECD. Towards an integrated health information system in the Netherlands. Paris: OECD Publishing; 2022. Accessed September 12, 2022 at: https://doi.org/10.1787/a1568975-en
  • 42 Mertens S. Het EPD van nu is een soort digitaal kladblok. Med Contemp 2021; 39: 36
  • 43 European Commission, Directorate-General for the Information Society and Media, Virtanen M, Ustun B, Rodrigues J, et al., eds. Semantic Interoperability for Better Health and Safer Healthcare: Deployment and Research Roadmap for Europe. Publications Office, 2013. Accessed December 9, 2021 at: https://data.europa.eu/doi/10.2759/38514
  • 44 Ebbers T, Takes RP, Smeele LE, Kool RB, van den Broek GB, Dirven R. The implementation of a multidisciplinary, Electronic Health Record embedded care pathway to improve structured data recording and decrease EHR burden; a before and after study (Unpublished manuscript). Department of Head and Neck Oncology, Radboud University Medical Center. 2022
  • 45 Ebbers T, Kool RB, Smeele LE. et al. The impact of structured and standardized documentation on documentation quality; a multicenter, retrospective study. J Med Syst 2022; 46 (07) 46
  • 46 Zorginformatiebouwstenen 2017. Accessed December 9, 2021 at: https://zibs.nl/wiki/ZIB_Publicatie_2017(NL)