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Measuring the quality of outpatient oncology care using data from clinical cancer registries

Literature research on the topic of “risks in health services research” is not fruitful because the topic has obviously only rarely been addressed so far. In order to differentiate the risks of health services research from the risks of other forms of research, we assume - in addition to the definitions of health services research offered so far (1) - that the primary goals of research and care are fundamentally different. In a traditional research project, the primary goal is to gain knowledge, while in a care project the primary interest is to provide the best possible care without the aim of gaining new knowledge at the same time. When this concept of the primary goals of research and care is applied, health care research projects are characterized by the combination of both goals.

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First publication date: 27.02.2012

Abstract: Messung der Qualität der ambulanten onkologischen Versorgung mit den Daten klinischer Krebsregister

The draft law on the early detection and registration of cancer law (KFRG) is a good and important step towards more transparency, quality measurement and assurance and can provide important information on some key aspects of the quality of care in Germany and show differences between regions. Insofar as the data collection of the cancer registries is based exclusively on the uniform oncological basic data set of the Association of German Tumor Centers (ADT) and the Society of Epidemiological Cancer Registries in Germany (GEKID) - as provided for in the current draft law (as of October 2012) - some aspects remain, among others that were classified as relevant for quality assurance by practicing hematologists and oncologists as well as representatives of patient and professional organizations were not taken into account. In order to ensure that “all elements of cancer treatment can be checked and assessed for their success” (see VIII. Sustainability in the justification on page 27 in the draft law), additional additional modules could be used in addition to the planned organ-specific ones, which have so far been included in the draft law The above-mentioned data set addresses rather neglected aspects of cancer care, e.g. the patient perspective or aspects of process quality, as exemplified in this article.

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Summary
The draft law on the early detection and registration of cancer law (KFRG) is a good and important step towards more transparency, quality measurement and assurance and can provide important information on some key aspects of the quality of care in Germany and show differences between regions. Insofar as the data collection of the cancer registries is based exclusively on the uniform oncological basic data set of the Association of German Tumor Centers (ADT) and the Society of Epidemiological Cancer Registries in Germany (GEKID) - as provided for in the current draft law (as of October 2012) - some aspects remain, among others that were classified as relevant for quality assurance by practicing hematologists and oncologists as well as representatives of patient and professional organizations were not taken into account. In order to ensure that “all elements of cancer treatment can be checked and assessed for their success” (see VIII. Sustainability in the justification on page 27 in the draft law), additional additional modules could be used in addition to the planned organ-specific ones, which have so far been included in the draft law The above-mentioned data set addresses rather neglected aspects of cancer care, e.g. the patient perspective or aspects of process quality, as exemplified in this article.

Measuring the quality of outpatient oncology care with data from clinical cancer registries
The cancer early detection and registry law (KFRG) is a good and important step towards more transparency, quality measurement and assurance. Indications of some central aspects of quality of care in Germany can be gained, especially from regional differences. To the extent that the data collection of the cancer registries relies solely on the uniform oncology basis dataset of the Arbeitsgemeinschaft Deutscher Tumorzentrum (ADT) and the Society of Epidemiological Cancer Registries in Germany (GEKID) – as contemplated in the bill (as of October 2012) – some features are left unconsidered that have been rated as relevant for quality assurance by office-based hematologists and oncologists as well as by representatives from patients and professional associations. In order to achieve that all elements of cancer treatment can be tested and evaluated regarding their success (see justification on page 27 in the bill), further supplementary modules could be applied in addition to the planned organic specific modules to address those aspects of cancer care that are rather neglected in the dataset, eg the patient perspective or aspects of process quality as shown exemplarily in this paper.

keywords
National Cancer Plan; draft law; clinical cancer registries; Quality indicators

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