title: The development of the Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS): a large-scale data sharing initiative.
abstract: BACKGROUND
  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).
  
  
  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.
  
  
  CONCLUSIONS
  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.
authors: Department of Geriatric Medicine, Radboud University Medical Center, Nijmegen, Netherlands ; Anu Research Centre, University College Cork, Cork, Ireland.
authors: Jennifer E
authors: JE
authors: Lutomski
authors: Maria A E
authors: MA
authors: Baars
authors: Bianca W M
authors: BW
authors: Schalk
authors: Han
authors: H
authors: Boter
authors: Bianca M
authors: BM
authors: Buurman
authors: Wendy P J
authors: WP
authors: den Elzen
authors: Aaltje P D
authors: AP
authors: Jansen
authors: Gertrudis I J M
authors: GI
authors: Kempen
authors: Bas
authors: B
authors: Steunenberg
authors: Ewout W
authors: EW
authors: Steyerberg
authors: Marcel G M
authors: MG
authors: Olde Rikkert
authors: René J F
authors: RJ
authors: Melis
mesh_terms: D000368:Aged; D017028:Caregivers; D019992:Databases as Topic; D003710:Demography; D005260:Female; D019538:Health Care Surveys; D006801:Humans; D033181:Information Dissemination; D008297:Male; D009426:Netherlands; D011788:Quality of Life