Guide for international research on patient quality registries in the Nordic countries

In 2016, NordForsk funded a Nordic project aiming to strengthen cooperation between national quality register organisations, or similar bodies in the Nordic countries. The overall aim of the project was to improve the framework for international comparisons of patient treatments and care, international research on rare diseases, knowledge-sharing in research, quality of care, international development of drugs and devices and patient involvement in quality registries. The project has resulted in a guidance document for Nordic quality register cooperation.

This guide/document is focused especially on creating conditions for comparisons within the Nordic countries, and for promoting international and inter-professional learning to explore how to use insights on improvement and research obtained with the support of quality registries to further develop health care services. This guide provides a checklist of some critical aspects identified by the project group regarding what to consider before starting to plan for a statistical report.

The conclusion from this project (during 2016) is that a Nordic collaboration using quality/patient registries is possible for academic, benchmarking, observational and industry-initiated studies.

The practical implementation of legal frameworks for registries is currently not clear in all Nordic countries. Therefore it is important to plan well in advance and to discuss the following areas in detail: data, IT, legal and ethics.

A Nordic role model exists, e.g. the Nordic Arthroplasty Register Association (NARA) and the project group believes that the possibility of including Finland and Iceland in future collaboration has increased.The participants in the project “Guide for international research on patient quality registries in the Nordic countries” have comprised individuals working in organisations responsible for the different registries in the Nordic countries.

Download Guide for international research on patient quality registries in the Nordic countries 

The guide was presented at the Conference in Nordic Collaboration on Registries in November 2017. See all presentations here.

The project group included:

Tina Lidén Mascher, R.N.,Degree in Physioth., MBA, Office of National Quality Registries, SKL, Stockholm, Sweden

Gunilla Jacobsson Ekman MD BSc, MSc, MMC/QRC , Stockholm, Sweden

Paul D. Bartels MD, Medical Director, CEO, The Danish Clinical Registries

Michael Borre, Clinical Professor, Senior Consultant , Department of Clinical Medicine- Department of Urology, Aarhus, Denmark

Halla Sigrún Arnardóttir R.N., Clinical Research Center, The National University Hospital of Iceland, Iceland

Arto Vuori, Institute for Health and Welfare, Helsinki, Finland

Unto Häkkinen, Research Professor, Institute for Health and Welfare, Helsinki, Finland

Eva Stensland MD, PhD, Head of Department, Norwegian Advisory Unit for Medical Quality Registries, Tromsø, Norway

For questions regarding the guide, please contact:  

Tina Lidén Mascher, e-mail: kristina.lidenmascher@skl.se

 

 

 

Contact person
Maria Nilsson - Senior Adviser
Contact person Maria Nilsson
Senior Adviser
Work +47 993 80 264
Facts about the project
Project manager
Tina Lidén Mascher (Coordinator), Office of National Quality Registries Sweden 
Duration
2016-2017