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The Development of the Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS): A Large-Scale Data Sharing Initiative

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 Pers...

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Autores principales: Lutomski, Jennifer E., Baars, Maria A. E., Schalk, Bianca W. M., Boter, Han, Buurman, Bianca M., den Elzen, Wendy P. J., Jansen, Aaltje P. D., Kempen, Gertrudis I. J. M., Steunenberg, Bas, Steyerberg, Ewout W., Olde Rikkert, Marcel G. M., Melis, René J. F.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Public Library of Science 2013
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3852259/
https://www.ncbi.nlm.nih.gov/pubmed/24324716
http://dx.doi.org/10.1371/journal.pone.0081673
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author Lutomski, Jennifer E.
Baars, Maria A. E.
Schalk, Bianca W. M.
Boter, Han
Buurman, Bianca M.
den Elzen, Wendy P. J.
Jansen, Aaltje P. D.
Kempen, Gertrudis I. J. M.
Steunenberg, Bas
Steyerberg, Ewout W.
Olde Rikkert, Marcel G. M.
Melis, René J. F.
author_facet Lutomski, Jennifer E.
Baars, Maria A. E.
Schalk, Bianca W. M.
Boter, Han
Buurman, Bianca M.
den Elzen, Wendy P. J.
Jansen, Aaltje P. D.
Kempen, Gertrudis I. J. M.
Steunenberg, Bas
Steyerberg, Ewout W.
Olde Rikkert, Marcel G. M.
Melis, René J. F.
author_sort Lutomski, Jennifer E.
collection PubMed
description 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.
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spelling pubmed-38522592013-12-09 The Development of the Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS): A Large-Scale Data Sharing Initiative Lutomski, Jennifer E. Baars, Maria A. E. Schalk, Bianca W. M. Boter, Han Buurman, Bianca M. den Elzen, Wendy P. J. Jansen, Aaltje P. D. Kempen, Gertrudis I. J. M. Steunenberg, Bas Steyerberg, Ewout W. Olde Rikkert, Marcel G. M. Melis, René J. F. PLoS One Research Article 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. Public Library of Science 2013-12-04 /pmc/articles/PMC3852259/ /pubmed/24324716 http://dx.doi.org/10.1371/journal.pone.0081673 Text en © 2013 Lutomski et al http://creativecommons.org/licenses/by/4.0/ 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 properly credited.
spellingShingle Research Article
Lutomski, Jennifer E.
Baars, Maria A. E.
Schalk, Bianca W. M.
Boter, Han
Buurman, Bianca M.
den Elzen, Wendy P. J.
Jansen, Aaltje P. D.
Kempen, Gertrudis I. J. M.
Steunenberg, Bas
Steyerberg, Ewout W.
Olde Rikkert, Marcel G. M.
Melis, René J. F.
The Development of the Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS): A Large-Scale Data Sharing Initiative
title The Development of the Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS): A Large-Scale Data Sharing Initiative
title_full The Development of the Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS): A Large-Scale Data Sharing Initiative
title_fullStr The Development of the Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS): A Large-Scale Data Sharing Initiative
title_full_unstemmed The Development of the Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS): A Large-Scale Data Sharing Initiative
title_short The Development of the Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS): A Large-Scale Data Sharing Initiative
title_sort development of the older persons and informal caregivers survey minimum dataset (topics-mds): a large-scale data sharing initiative
topic Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3852259/
https://www.ncbi.nlm.nih.gov/pubmed/24324716
http://dx.doi.org/10.1371/journal.pone.0081673
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