The power of empirical data; lessons from the clinical registry initiatives in Scandinavian cancer care
(2020) In Acta Oncologica 59(11). p.1343-1356- Abstract
Background: In Scandinavia, there is a strong tradition for research and quality monitoring based on registry data. In Denmark, Norway and Sweden, 63 clinical registries collect data on disease characteristics, treatment and outcome of various cancer diagnoses and groups based on process-related and outcome-related variables. Aim: We describe the cancer-related clinical registries, compare organizational structures and quality indicators and provide examples of how these registries have been used to monitor clinical performance, develop prediction models, assess outcome and provide quality benchmarks. Further, we define unmet needs such as inclusion of patient-reported outcome variables, harmonization of variables and barriers for data... (More)
Background: In Scandinavia, there is a strong tradition for research and quality monitoring based on registry data. In Denmark, Norway and Sweden, 63 clinical registries collect data on disease characteristics, treatment and outcome of various cancer diagnoses and groups based on process-related and outcome-related variables. Aim: We describe the cancer-related clinical registries, compare organizational structures and quality indicators and provide examples of how these registries have been used to monitor clinical performance, develop prediction models, assess outcome and provide quality benchmarks. Further, we define unmet needs such as inclusion of patient-reported outcome variables, harmonization of variables and barriers for data sharing. Results and conclusions: The clinical registry framework provides an empirical basis for evidence-based development of high-quality and equitable cancer care. The registries can be used to follow implementation of new treatment principles and monitor patterns of care across geographical areas and patient groups. At the same time, the lessons learnt suggest that further developments and coordination are needed to utilize the full potential of the registry initiative in cancer care.
(Less)
- author
- organization
- publishing date
- 2020-10-26
- type
- Contribution to journal
- publication status
- published
- subject
- keywords
- Epidemiology, health data, malignancies, outcome, parameter, quality registries
- in
- Acta Oncologica
- volume
- 59
- issue
- 11
- pages
- 14 pages
- publisher
- Taylor & Francis
- external identifiers
-
- pmid:32981417
- scopus:85091612452
- ISSN
- 0284-186X
- DOI
- 10.1080/0284186X.2020.1820573
- language
- English
- LU publication?
- yes
- id
- af3d2c99-8ded-46cc-bf45-b59efab61f1b
- date added to LUP
- 2020-11-02 10:01:44
- date last changed
- 2024-04-03 14:16:06
@article{af3d2c99-8ded-46cc-bf45-b59efab61f1b,
abstract = {{<p>Background: In Scandinavia, there is a strong tradition for research and quality monitoring based on registry data. In Denmark, Norway and Sweden, 63 clinical registries collect data on disease characteristics, treatment and outcome of various cancer diagnoses and groups based on process-related and outcome-related variables. Aim: We describe the cancer-related clinical registries, compare organizational structures and quality indicators and provide examples of how these registries have been used to monitor clinical performance, develop prediction models, assess outcome and provide quality benchmarks. Further, we define unmet needs such as inclusion of patient-reported outcome variables, harmonization of variables and barriers for data sharing. Results and conclusions: The clinical registry framework provides an empirical basis for evidence-based development of high-quality and equitable cancer care. The registries can be used to follow implementation of new treatment principles and monitor patterns of care across geographical areas and patient groups. At the same time, the lessons learnt suggest that further developments and coordination are needed to utilize the full potential of the registry initiative in cancer care.</p>}},
author = {{Nilbert, Mef and Thomsen, Linda Aagaard and Winther Jensen, Jens and Møller, Henrik and Borre, Michael and Widenlou Nordmark, Arvid and Lambe, Mats and Brändström, Helena and Kørner, Hartwig and Møller, Bjørn and Ursin, Giske}},
issn = {{0284-186X}},
keywords = {{Epidemiology; health data; malignancies; outcome; parameter; quality registries}},
language = {{eng}},
month = {{10}},
number = {{11}},
pages = {{1343--1356}},
publisher = {{Taylor & Francis}},
series = {{Acta Oncologica}},
title = {{The power of empirical data; lessons from the clinical registry initiatives in Scandinavian cancer care}},
url = {{http://dx.doi.org/10.1080/0284186X.2020.1820573}},
doi = {{10.1080/0284186X.2020.1820573}},
volume = {{59}},
year = {{2020}},
}