Universität zu Köln

Scholten, N., Pfaff, H., Raabe, N. and Kowalski, C. (2017). The Willingness to Consent to the Linkage of Primary and Secondary Data: An Analysis Based on a Survey of Patients with Primary Breast Cancer in Northrhine Westfalia. Gesundheitswesen, 79 (3). S. 210 - 219. STUTTGART: GEORG THIEME VERLAG KG. ISSN 1439-4421

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Abstract

Introduction By linking data it is possible to merge, for example, survey data with routine data from statutory health insurance (GKV), to gain benefit from the advantages of both. As personal data is involved, it is necessary to obtain consent. Previous studies show that willingness to release this kind of data for scientific research is limited. This fact restricts the number of participants and can cause selection bias. The aim of our study was to analyze willingness to consent to the linkage of survey data with statutory health insurance data in patients with primary breast cancer. Associations between approval and socio-demographic characteristics were explored. Method In the annual survey of patients with primary breast cancer in certified breast centers in North Rhine-Westphalia, all included patients were questioned concerning their willingness to consent to data linkage. We distinguished between patients insured by AOK Rhineland/Hamburg and all other patients: based on cooperation with AOK Rhineland/Hamburg, we obtained consent to actually link the data for all patients insured there. All other patients were questioned in terms of their insurance and their willingness to consent in general. Results A total of 2,387 questionnaires were returned, giving a return rate of 49.3 %. For the AOK Rhineland/Hamburg-insured patients, the consent rate was at 89.6 %. At 75.7 %, positive attitudes towards data linkage turned out to be a bit lower for patients with other insurers. Under the assumption that all non-responders disapprove data linkage, still 38.1 % of patients showed a positive attitude towards data linkage. As a result of the multivariable model, insurance status (private vs. statutory) and first language turned out to be the only significant factors influencing the response. The consent of patients insured by AOK Rhineland/Hamburg is not significantly influenced by any of the measured socio-demographic factors. Conclusion Currently, there is not much knowledge on the acceptance of data linkage in patients suffering from an acute illness. Although our results are restricted to breast cancer patients, they are able to uncover problems and chances concerning data linkage.

Item Type:	Journal Article
Creators:	Creators Email ORCID ORCID Put Code Scholten, N. UNSPECIFIED UNSPECIFIED UNSPECIFIED Pfaff, H. UNSPECIFIED UNSPECIFIED UNSPECIFIED Raabe, N. UNSPECIFIED UNSPECIFIED UNSPECIFIED Kowalski, C. UNSPECIFIED UNSPECIFIED UNSPECIFIED
URN:	urn:nbn:de:hbz:38-237081
DOI:	10.1055/s-0035-1564182
Journal or Publication Title:	Gesundheitswesen
Volume:	79
Number:	3
Page Range:	S. 210 - 219
Date:	2017
Publisher:	GEORG THIEME VERLAG KG
Place of Publication:	STUTTGART
ISSN:	1439-4421
Language:	German
Faculty:	Unspecified
Divisions:	Unspecified
Subjects:	no entry
Uncontrolled Keywords:	Keywords Language INFORMED-CONSENT; RECORDS; LINKING; PEOPLE Multiple languages Public, Environmental & Occupational Health Multiple languages
Refereed:	Yes
URI:	http://kups.ub.uni-koeln.de/id/eprint/23708