The power of empirical data; lessons from the clinical registry initiatives in Scandinavian cancer care

Forskningsoutput: TidskriftsbidragÖversiktsartikel

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 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.

Detaljer

Författare
  • Mef Nilbert
  • Linda Aagaard Thomsen
  • Jens Winther Jensen
  • Henrik Møller
  • Michael Borre
  • Arvid Widenlou Nordmark
  • Mats Lambe
  • Helena Brändström
  • Hartwig Kørner
  • Bjørn Møller
  • Giske Ursin
Enheter & grupper
Externa organisationer
  • Danish Cancer Society Research Center
  • University of Copenhagen
  • Hvidovre Hospital
  • Karolinska Institute
  • University of Bergen
  • Cancer Registry of Norway Institute of Population-Based Cancer Research
  • The Danish Clinical Registries (RKKP)
  • Danske Multidisciplinære Cancer Grupper (DMCG)
  • Regionala cancercentrum i samverkan (RCC)
Forskningsområden

Ämnesklassifikation (UKÄ) – OBLIGATORISK

  • Folkhälsovetenskap, global hälsa, socialmedicin och epidemiologi
  • Cancer och onkologi

Nyckelord

Originalspråkengelska
Sidor (från-till)1343-1356
Antal sidor14
TidskriftActa Oncologica
Volym59
Utgåva nummer11
Tidigt onlinedatum2020 okt 26
StatusPublished - 2020
PublikationskategoriForskning
Peer review utfördJa