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CC BY-NC-ND 4.0 · Methods Inf Med 2021; 60(S 01): e1-e8
DOI: 10.1055/s-0041-1724104
Original Article

Recent Trends in Patient Registries for Health Services Research

Jürgen Stausberg
1   Institute for Medical Informatics, Biometry and Epidemiology (IMIBE), Faculty of Medicine, University Duisburg-Essen, Essen, Nordrhein-Westfalen, Germany
,
Sonja Harkener
1   Institute for Medical Informatics, Biometry and Epidemiology (IMIBE), Faculty of Medicine, University Duisburg-Essen, Essen, Nordrhein-Westfalen, Germany
,
Sebastian C. Semler
2   TMF Technology, Methods, and Infrastructure for Networked Medical Research, Berlin, Germany
› Author Affiliations Funding The project was funded by the German Federal Ministry of Education and Research under contracts 01GY1720A/01GY1720B and 01GY1917A/01GY1917B. The authors gratefully acknowledge the cooperation with the six registries.
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Abstract

Background Patient registries are an established methodology in health services research. Since more than 150 years, registries collect information concerning groups of similar patients to answer research questions. Elaborated recommendations about an appropriate development and an efficient operation of registries are available. However, the scene changes rapidly.

Objectives The aim of the study is to describe current trends in registry research for health services research.

Methods Registries developed within a German funding scheme for model registries in health services research were analyzed. The observations were compared with recent recommendations of the Agency for Healthcare Research and Quality (AHRQ) on registries in the 21st century.

Results Analyzing six registries from the funding scheme revealed the following trends: recruiting healthy individuals, representing familial or other interpersonal relationships, recording of patient-reported experiences or outcomes, accepting participants as study sites, active informing of participants, integrating the registry with other data collections, and transferring data from the registry to electronic patient records. This list partly complies with the issues discussed by the AHRQ. The AHRQ structured its ideas in five chapters, increasing focus on the patient, engaging patients as partners, digital health and patient registries, direct-to-patient registry, and registry networks.

Conclusion For the near future, it can be said that the concept and the design of a registry should place the patient in the center. Registries will be increasingly linked together and interconnected with other data collections. New challenges arise regarding the management of data quality and the interpretation of results from less controlled settings. Here, further research related to the methodology of registries is needed.

Keywords

health services research - patient-reported outcome measures - patients - registries - trends


Publication History

Received: 08 September 2020

Accepted: 19 December 2020

Article published online:
16 April 2021

© 2021. 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/)

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  • References

  • 1 Dreyer NA, Garner S. Registries for robust evidence. JAMA 2009; 302 (07) 790-791
    CrossrefPubMedGoogle Scholar
  • 2 Fleurence RL, Blake K, Shuren J. The future of registries in the era of real-world evidence for medical devices. JAMA Cardiol 2019; 4 (03) 197-198
    CrossrefPubMedGoogle Scholar
  • 3 Lauer MS, D'Agostino Sr RB. The randomized registry trial—the next disruptive technology in clinical research?. N Engl J Med 2013; 369 (17) 1579-1581
    CrossrefPubMedGoogle Scholar
  • 4 Irgens LM. The origin of registry-based medical research and care. Acta Neurol Scand Suppl 2012; 126 (Suppl. 195) 4-6
    CrossrefPubMedGoogle Scholar
  • 5 Winiwarter AV. Cancer (1848–1916). 1948: 356 . Available at: https://acsjournals.onlinelibrary.wiley.com/toc/10970142/1948/1/3
    PubMedGoogle Scholar
  • 6 Brooke EM. The Current and Future Use of Registers in Health Information Systems. Geneva: World Health Organization; 1974
    Google Scholar
  • 7 Jervelund SS, de Montgomery CJ. Nordic registry data (part III): use of healthcare services, complications hereof, and inequalities in mortality. Scand J Public Health 2020; 48 (03) 241-242
    CrossrefPubMedGoogle Scholar
  • 8 Newton J, Garner S. Disease Registers in England. Oxford: Institute of Health Sciences, University of Oxford; 2002
    Google Scholar
  • 9 Evans SM, Bohensky M, Cameron PA, McNeil J. A survey of Australian clinical registries: can quality of care be measured?. Intern Med J 2011; 41 (1a): 42-48
    CrossrefPubMedGoogle Scholar
  • 10 Niederländer C, Wahlster P, Kriza C, Kolominsky-Rabas P. Registries of implantable medical devices in Europe. Health Policy 2013; 113 (1-2): 20-37
    CrossrefPubMedGoogle Scholar
  • 11 Zaletel M, Kralj M. eds. Methodological Guidelines and Recommendations for Efficient and Rational Governance of Patient Registries. Ljubljana: National Institute of Public Health, Slovenia; 2015
    Google Scholar
  • 12 Gliklich R, Dreyer N, Leavy Me. Registries for Evaluating Patient Outcomes: A User's Guide. 3rd ed.. Two Volumes. Rockville, MD: Agency for Healthcare Research and Quality; 2014
    Google Scholar
  • 13 Stausberg J, Maier B, Bestehorn K. et al. Memorandum registry for health services research: update 2019. Gesundheitswesen 2020; 82 (03) e39-e66
    Article in Thieme ConnectPubMedGoogle Scholar
  • 14 Leiner F, Haux R. Systematic planning of clinical documentation. Methods Inf Med 1996; 35 (01) 25-34
    Article in Thieme ConnectPubMedGoogle Scholar
  • 15 Gliklich RE, Dreyer NA, Leavy MB, Christian JB. eds. 21st Century Patient Registries. Ebook Addendum to Registries for Evaluating Patient Outcomes: A User's Guide. 3rd ed.. Rockville, MD: Agency for Healthcare Research and Quality; 2018
    Google Scholar
  • 16 Stausberg J, Harkener S, Siddiqui R, Semler SC. IT infrastructure for registries in health services research: a market study in Germany. Stud Health Technol Inform 2018; 251: 183-186
    PubMedGoogle Scholar
  • 17 Semler SC, Wissing F, Heyder R. German medical informatics initiative. Methods Inf Med 2018; 57 (S 01): e50-e56
    Article in Thieme ConnectPubMedGoogle Scholar
  • 18 Moayyeri A, Hammond CJ, Hart DJ, Spector TD. The UK adult twin registry (TwinsUK Resource). Twin Res Hum Genet 2013; 16 (01) 144-149
    CrossrefPubMedGoogle Scholar
  • 19 Skytthe A, Kyvik KO, Holm NV, Christensen K. The Danish Twin Registry. Scand J Public Health 2011; 39 (Suppl. 07) 75-78
    CrossrefPubMedGoogle Scholar
  • 20 Nilsson E, Orwelius L, Kristenson M. Patient-reported outcomes in the Swedish national quality registers. J Intern Med 2016; 279 (02) 141-153
    CrossrefPubMedGoogle Scholar
  • 21 Timmins N. NHS goes to the PROMS. BMJ 2008; 336 (7659): 1464-1465
    CrossrefPubMedGoogle Scholar
  • 22 Coons SJ, Eremenco S, Lundy JJ, O'Donohoe P, O'Gorman H, Malizia W. Capturing patient-reported outcome (PRO) data electronically: the past, present, and promise of ePRO measurement in clinical trials. Patient 2015; 8 (04) 301-309
    CrossrefPubMedGoogle Scholar
  • 23 Chang EM, Gillespie EF, Shaverdian N. Truthfulness in patient-reported outcomes: factors affecting patients' responses and impact on data quality. Patient Relat Outcome Meas 2019; 10: 171-186
    CrossrefPubMedGoogle Scholar
  • 24 Mears GD, Rosamond WD, Lohmeier C. et al. A link to improve stroke patient care: a successful linkage between a statewide emergency medical services data system and a stroke registry. Acad Emerg Med 2010; 17 (12) 1398-1404
    CrossrefPubMedGoogle Scholar
  • 25 Findlay I, Morris T, Zhang R. et al. Linking hospital patient records for suspected or established acute coronary syndrome in a complex secondary care system: a proof-of-concept e-registry in National Health Service Scotland. Eur Heart J Qual Care Clin Outcomes 2018; 4 (03) 155-167
    PubMedGoogle Scholar
  • 26 Prinz N, Zolin A, Konrad K. et al; ECFS patient registry and the DPV registry. Characteristics of cystic fibrosis-related diabetes: data from two different sources the European cystic fibrosis society patient registry and German/Austrian diabetes prospective follow-up registry. Pediatr Diabetes 2019; 20 (03) 255-262
    CrossrefPubMedGoogle Scholar
  • 27 Wicks P, Massagli M, Frost J. et al. Sharing health data for better outcomes on PatientsLikeMe. J Med Internet Res 2010; 12 (02) e19
    CrossrefPubMedGoogle Scholar
  • 28 Harkener S, Stausberg J, Hagel C, Siddiqui R. Towards a core set of indicators for data quality of registries. Stud Health Technol Inform 2019; 267: 39-45
    CrossrefPubMedGoogle Scholar
  • 29 Rajan NS, Gouripeddi R, Mo P, Madsen RK, Facelli JC. Towards a content agnostic computable knowledge repository for data quality assessment. Comput Methods Programs Biomed 2019; 177: 193-201
    CrossrefPubMedGoogle Scholar
  • 30 Eichler GS, Cochin E, Han J. et al. Exploring concordance of patient-reported information on PatientsLikeMe and medical claims data at the patient level. J Med Internet Res 2016; 18 (05) e110
    CrossrefPubMedGoogle Scholar