The development of the Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS): a large-scale data sharing initiative

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dc.contributor.author Lutomski, Jennifer E.
dc.contributor.author Baars, Maria A. E.
dc.contributor.author Schalk, Bianca W. M.
dc.contributor.author Boter, Han
dc.contributor.author Buurman, Bianca M.
dc.contributor.author den Elzen, Wendy P. J.
dc.contributor.author Jansen, Aaltje P. D.
dc.contributor.author Kempen, Gertrudis I. J. M.
dc.contributor.author Steunenberg, Bas
dc.contributor.author Steyerberg, Ewout W.
dc.contributor.author Rikkert, Marcel G. M. Olde
dc.contributor.author Melis, René J. F.
dc.date.accessioned 2016-02-17T11:44:42Z
dc.date.available 2016-02-17T11:44:42Z
dc.date.issued 2013
dc.identifier.citation Lutomski JE, Baars MAE, Schalk BWM, Boter H, Buurman BM, den Elzen WPJ, et al. (2013) The Development of the Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS): A Large-Scale Data Sharing Initiative. PLoS ONE 8(12): e81673. doi:10.1371/journal.pone.0081673
dc.identifier.volume 8 en
dc.identifier.issued 12 en
dc.identifier.issn 1932-6203
dc.identifier.uri http://hdl.handle.net/10468/2352
dc.identifier.doi 10.1371/journal.pone.0081673
dc.description.abstract Introduction: In 2008, the Ministry of Health, Welfare and Sport commissioned the National Care for the Elderly Programme. While numerous research projects in older persons' health care were to be conducted under this national agenda, the Programme further advocated the development of The Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS) which would be integrated into all funded research protocols. In this context, we describe TOPICS data sharing initiative (www.topics-mds.eu). Materials and Methods: A working group drafted TOPICS-MDS prototype, which was subsequently approved by a multidisciplinary panel. Using instruments validated for older populations, information was collected on demographics, morbidity, quality of life, functional limitations, mental health, social functioning and health service utilisation. For informal caregivers, information was collected on demographics, hours of informal care and quality of life (including subjective care-related burden). Results: Between 2010 and 2013, a total of 41 research projects contributed data to TOPICS-MDS, resulting in preliminary data available for 32,310 older persons and 3,940 informal caregivers. The majority of studies sampled were from primary care settings and inclusion criteria differed across studies. Discussion: TOPICS-MDS is a public data repository which contains essential data to better understand health challenges experienced by older persons and informal caregivers. Such findings are relevant for countries where increasing health-related expenditure has necessitated the evaluation of contemporary health care delivery. Although open sharing of data can be difficult to achieve in practice, proactively addressing issues of data protection, conflicting data analysis requests and funding limitations during TOPICS-MDS developmental phase has fostered a data sharing culture. To date, TOPICS-MDS has been successfully incorporated into 41 research projects, thus supporting the feasibility of constructing a large (>30,000 observations), standardised dataset pooled from various study protocols with different sampling frameworks. This unique implementation strategy improves efficiency and facilitates individual-level data meta-analysis. en
dc.description.sponsorship ZonMw (Netherlands Organisation for Health Research and Development National Care for the Elderly Programme Grant No. 60-61900-98-371) en
dc.format.mimetype application/pdf en
dc.language.iso en en
dc.publisher Public Library of Science en
dc.rights © 2015 Lutomski et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited en
dc.rights.uri http://creativecommons.org/licenses/by/4.0/ en
dc.subject Quality of life en
dc.subject Resident assessment instrument en
dc.subject Functional status en
dc.subject Elderly people en
dc.subject Frailty index en
dc.subject Data set en
dc.subject Care en
dc.subject Metaanalysis en
dc.subject Mortality en
dc.subject RAND-36 en
dc.title The development of the Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS): a large-scale data sharing initiative en
dc.type Article (peer-reviewed) en
dc.internal.authorcontactother Jennifer Lutomski, Anu Research Centre, Department of Obstetrics and Gynaecology, University College Cork, Cork, Ireland. +353-21-490-3000 Email: obs.gyn@ucc.ie en
dc.internal.availability Full text available en
dc.description.version Published Version en
dc.internal.wokid WOS:000327949300102
dc.contributor.funder ZonMw
dc.description.status Peer reviewed en
dc.identifier.journaltitle PLOS ONE en
dc.internal.IRISemailaddress j.lutomski@ucc.ie en
dc.identifier.articleid e81673


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© 2015 Lutomski et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited Except where otherwise noted, this item's license is described as © 2015 Lutomski et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited
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