Addressing the Data Linking Challenges

Summary

Background: PARENT JA (cross-border Patient Registries iNiTiative Joint Action), a joint EU and Member States project, has conducted a research among EU patient registries aimed at gathering information on the registries’ interoperability readiness. Leaning on the information and data collected through the previous PARENT JA research, this study aims to provide more detailed view into the registry holders’ practical challenges with data linking. Since the studies which dealt with patient data exchange have often neglected the registry holders’ performance of data exchange, we wanted to put a spotlight on various EU registry holders’ practices and operations, aiming to detect their needs and concerns in the process of running an interoperable registry. The focus of this study was identifying the main practices and challenges in patient registries interoperability improvement.

Methods: The basis for this analysis were the data collected in the series of structured interviews. The size of the interview sample was 13 patient registries, each from a different EU country. The structured interview consisted of nine questions and was conducted in two parts: oral and written. The answers were analysed using open coding.

Results: Results are interpreted in the context of the six main themes that emerged through a comprehensive analysis. (1) Examples of data exchange: The most common reported data exchange practices were seen only as a way to achieve the most immediate needs and interests of the individual registries. (2) Awareness and use of international standards: International data and clinical standards were not widely used by the interviewed registries. (3) Use of data models and formats: In the area of data models and formats there is no universally used practice. (4) Data request protocols and procedures: Procedures and protocols varied, mostly depending on the national legal systems in which the patient registries operated. (5) Data security and integrity: Security of personal data was a universal concern for all registry holders that were interviewed; identifiable individual data was shared only in one case. (6) Opportunities and challenges of registry interoperability: most registry holders responded that their registries were well prepared for interoperability practices and that data exchange has never been their primary operative concern.

Conclusions: Most of the difficulties regarding data linking were not necessarily associated with technical issues, which registry holders listed outright. Our analysis showed that the lack of interoperability came as a result of organizational or legal constraints that made the registries unable to process and conduct data linking quickly and effectively with other sources.

Keywords

Registries - health information exchange - patient data privacy - attitude of health personnel

• References

• 1 Zaletel M, Kralj M. Methodological guidelines and recommendations for efficient and rational governance of patient registries [Internet].. Slovenia: National Institute of Public Health; 2015. [cited 2016 Jul 18]. Available from: http://ec.europa.eu/health/ehealth/docs/patient_registries_guidelines_en.pdf.
• 2 Gliklich RE, Dreyer NA, Leavy MB. Registries for Evaluating Patient Outcomes: A User’s Guide.. Rockville (MD): Agency for Healthcare Research and Quality (US); 2014
• 3 Miller RH, Sim I. Physicians’ use of electronic medical records: barriers and solutions. Health Aff (Millwood). 2004; 23 (02) 116-126.
• 4 Hersh WR, Totten AM, Eden KB, Devine B, Gorman P, Kassakian SZ, Woods SS, Daeges M, Pappas M, McDonagh MS. Outcomes From Health Information Exchange: Systematic Review and Future Research Needs. JMIR Med Inform. 2015; 3 (04) e39.
• 5 Doupi P, Ivankovic D, Pristas I, Tuomi-Nikula A, Bestek M, Meglic M. Sustainability of cross-border collaboration on secondary use of registry data – Business models Analysis Report. 2016 [cited 2016 Jul 21]. Available from: http://patientregistries.eu/deliverables.
• 6 PARENT Joint Action homepage [cited 2016 Jul 18]. Available from: http://www.patientregistries.eu.
• 7 Commission E. European Interoperability Framework (EIF) for European public services. 2010 [cited 2016 Jul 22]. Available from: http://ec.europa.eu/isa/strategy/index_en.html.
• 8 Pristas I, Doupi P, Karanikas H, Brkic M, Plese B, Zaletel M, Magajne M, Llorens Zuriaga O, López- Briones C. The Eu Patient Registry Landscape: Survey of Registry Profiles Through Parent JA Research And Framework. Value in Health. 2015; 18 (07) A562-A563.
• 9 PARENT JA cross-border Patient Registry INiTiative Joint Action – Registry of Registries [cited 2016 Jul 18]. Available from: http://www.parent-ror.eu/#/registries.
• 10 McGinn CA, Grenier S, Duplantie J, Shaw N, Sicotte C, Mathieu L, Leduc Y, Légaré F, Gagnon M-P. Comparison of user groups’ perspectives of barriers and facilitators to implementing electronic health records: a systematic review. BMC Medicine. 2011; 9: 46.
• 11 Korngut L, MacKean G, Casselman L, Johnston M, Day L, Lam D, Lorenzetti D, Warner J, Jetté N, Pringsheim T. Perspectives on neurological patient registries: a literature review and focus group study. BMC Med Res Methodol. 2013; 13: 135.
• 12 Pristas I, Doupi P, Meglic M, Karanikas H, Zaletel M, Brkic M, Plese B, Zuriaga Llorens O. Supporting Interoperable Eu Patient Registries: Survey of Registry Holders’ Needs. Value in Health. 2014; 17: A323-A686.
• 13 Böhm A. Theoretical Coding: Text Analysis in Grounded Theory. Flick U, von Kardorff E, Steinke I. A Companion to Qualitative Research.. London, Thousand Oaks, New Delhi: SAGE Publications; 2004: 270-275.
• 14 Eurostat Data Database [cited 2016 Dec 16]. Available from: http://ec.europa.eu/eurostat/data/data-base.
• 15 Surveillance Atlas of Infectious Diseases [cited 2016 Dec 16]. Available from: http://atlas.ecdc.euro-pa.eu/public/index.aspx?Instance=GeneralAtlas.
• 16 Sharing registry data for health research in the Nordic countries – a proposal for increased collaboration: Report from the Nordic Task Force for Access to national data repositories [cited 2016 Aug 5]. Available from: http://ki.se/sites/default/files/sharing_registry_data_for_health_research_rapport.pdf.
• 17 Cabana MD, Rand CS, Powe NR, Wu AW, Wilson MH, Abboud PA, Rubin HR. Why don’t physicians follow clinical practice guidelines? A framework for improvement. JAMA. 1999; 282 (15) 1458-1465.