Time and cost of linking administrative datasets for outcomes assessment in a follow-up study of participants from two randomised trials

Abstract Background For the follow-up of participants in randomised trials, data linkage is thought a more cost-efficient method for assessing outcomes. However, researchers often encounter technical and budgetary challenges. Data requests often require a significant amount of information from resea...

Full description

Saved in:
Bibliographic Details
Main Authors: Mohammad Shahbaz, Jane E. Harding, Barry Milne, Anthony Walters, Lisa Underwood, Martin von Randow, Lena Jacob, Greg D. Gamble, for the ANCHOR Study Group
Format: Article
Language:English
Published: BMC 2025-01-01
Series:BMC Medical Research Methodology
Subjects:
Online Access:https://doi.org/10.1186/s12874-025-02458-9
Tags: Add Tag
No Tags, Be the first to tag this record!
_version_ 1832571615594938368
author Mohammad Shahbaz
Jane E. Harding
Barry Milne
Anthony Walters
Lisa Underwood
Martin von Randow
Lena Jacob
Greg D. Gamble
for the ANCHOR Study Group
author_facet Mohammad Shahbaz
Jane E. Harding
Barry Milne
Anthony Walters
Lisa Underwood
Martin von Randow
Lena Jacob
Greg D. Gamble
for the ANCHOR Study Group
author_sort Mohammad Shahbaz
collection DOAJ
description Abstract Background For the follow-up of participants in randomised trials, data linkage is thought a more cost-efficient method for assessing outcomes. However, researchers often encounter technical and budgetary challenges. Data requests often require a significant amount of information from researchers, and can take several years to process. This study aimed to determine the feasibility, direct costs and the total time required to access administrative datasets for assessment of outcomes in a follow-up study of two randomised trials. Methods We applied to access administrative datasets from New Zealand government agencies. All actions of study team members, along with their corresponding dates, were recorded prospectively for accessing data from each agency. Team members estimated the average time they spent on each action, and invoices from agencies were recorded. Additionally, we compared the estimated costs and time required for data linkage with those for obtaining self-reported questionnaires and conducting in-person assessments. Results Eight agencies were approached to supply data, of which seven gave approval. The time from first enquiry to receiving an initial dataset ranged from 96 to 854 days. For 859 participants, the estimated time required to obtain outcome data from agencies was 1,530 min; to obtain completed self-reported questionnaires was 11,025 min; and to complete in-person assessments was 77,310 min. The estimated total costs were 20,827 NZD for data linkage, 11,735 NZD for self-reported questionnaires, and 116,085 NZD for in-person assessments. Using this data, we estimate that for a cohort of 100 participants, the costs would be similar for data linkage and in-person assessments. For a cohort of 5,000 participants, we estimate that costs would be similar for data linkage and questionnaires, but ten-fold higher for in-person assessments. Conclusions Obtaining administrative datasets demands a substantial amount of time and effort. However, data linkage is a feasible method for outcome ascertainment in follow-up studies in New Zealand. For large cohorts, data linkage is likely to be less costly, whereas for small cohorts, in-person assessment has similar costs but is likely to be faster and allows direct assessment of outcomes.
format Article
id doaj-art-cb5426f2f6dc48f7ba731f5cf478296f
institution Kabale University
issn 1471-2288
language English
publishDate 2025-01-01
publisher BMC
record_format Article
series BMC Medical Research Methodology
spelling doaj-art-cb5426f2f6dc48f7ba731f5cf478296f2025-02-02T12:30:15ZengBMCBMC Medical Research Methodology1471-22882025-01-0125111410.1186/s12874-025-02458-9Time and cost of linking administrative datasets for outcomes assessment in a follow-up study of participants from two randomised trialsMohammad Shahbaz0Jane E. Harding1Barry Milne2Anthony Walters3Lisa Underwood4Martin von Randow5Lena Jacob6Greg D. Gamble7for the ANCHOR Study GroupLiggins Institute, The University of AucklandLiggins Institute, The University of AucklandCentre of Methods and Policy Application in Social Sciences, University of AucklandLiggins Institute, The University of AucklandCentre of Methods and Policy Application in Social Sciences, University of AucklandCentre of Methods and Policy Application in Social Sciences, University of AucklandLiggins Institute, The University of AucklandLiggins Institute, The University of AucklandAbstract Background For the follow-up of participants in randomised trials, data linkage is thought a more cost-efficient method for assessing outcomes. However, researchers often encounter technical and budgetary challenges. Data requests often require a significant amount of information from researchers, and can take several years to process. This study aimed to determine the feasibility, direct costs and the total time required to access administrative datasets for assessment of outcomes in a follow-up study of two randomised trials. Methods We applied to access administrative datasets from New Zealand government agencies. All actions of study team members, along with their corresponding dates, were recorded prospectively for accessing data from each agency. Team members estimated the average time they spent on each action, and invoices from agencies were recorded. Additionally, we compared the estimated costs and time required for data linkage with those for obtaining self-reported questionnaires and conducting in-person assessments. Results Eight agencies were approached to supply data, of which seven gave approval. The time from first enquiry to receiving an initial dataset ranged from 96 to 854 days. For 859 participants, the estimated time required to obtain outcome data from agencies was 1,530 min; to obtain completed self-reported questionnaires was 11,025 min; and to complete in-person assessments was 77,310 min. The estimated total costs were 20,827 NZD for data linkage, 11,735 NZD for self-reported questionnaires, and 116,085 NZD for in-person assessments. Using this data, we estimate that for a cohort of 100 participants, the costs would be similar for data linkage and in-person assessments. For a cohort of 5,000 participants, we estimate that costs would be similar for data linkage and questionnaires, but ten-fold higher for in-person assessments. Conclusions Obtaining administrative datasets demands a substantial amount of time and effort. However, data linkage is a feasible method for outcome ascertainment in follow-up studies in New Zealand. For large cohorts, data linkage is likely to be less costly, whereas for small cohorts, in-person assessment has similar costs but is likely to be faster and allows direct assessment of outcomes.https://doi.org/10.1186/s12874-025-02458-9Record linkageFeasibility studiesRegistriesCosts and cost analysisSurvey and questionnairesData management
spellingShingle Mohammad Shahbaz
Jane E. Harding
Barry Milne
Anthony Walters
Lisa Underwood
Martin von Randow
Lena Jacob
Greg D. Gamble
for the ANCHOR Study Group
Time and cost of linking administrative datasets for outcomes assessment in a follow-up study of participants from two randomised trials
BMC Medical Research Methodology
Record linkage
Feasibility studies
Registries
Costs and cost analysis
Survey and questionnaires
Data management
title Time and cost of linking administrative datasets for outcomes assessment in a follow-up study of participants from two randomised trials
title_full Time and cost of linking administrative datasets for outcomes assessment in a follow-up study of participants from two randomised trials
title_fullStr Time and cost of linking administrative datasets for outcomes assessment in a follow-up study of participants from two randomised trials
title_full_unstemmed Time and cost of linking administrative datasets for outcomes assessment in a follow-up study of participants from two randomised trials
title_short Time and cost of linking administrative datasets for outcomes assessment in a follow-up study of participants from two randomised trials
title_sort time and cost of linking administrative datasets for outcomes assessment in a follow up study of participants from two randomised trials
topic Record linkage
Feasibility studies
Registries
Costs and cost analysis
Survey and questionnaires
Data management
url https://doi.org/10.1186/s12874-025-02458-9
work_keys_str_mv AT mohammadshahbaz timeandcostoflinkingadministrativedatasetsforoutcomesassessmentinafollowupstudyofparticipantsfromtworandomisedtrials
AT janeeharding timeandcostoflinkingadministrativedatasetsforoutcomesassessmentinafollowupstudyofparticipantsfromtworandomisedtrials
AT barrymilne timeandcostoflinkingadministrativedatasetsforoutcomesassessmentinafollowupstudyofparticipantsfromtworandomisedtrials
AT anthonywalters timeandcostoflinkingadministrativedatasetsforoutcomesassessmentinafollowupstudyofparticipantsfromtworandomisedtrials
AT lisaunderwood timeandcostoflinkingadministrativedatasetsforoutcomesassessmentinafollowupstudyofparticipantsfromtworandomisedtrials
AT martinvonrandow timeandcostoflinkingadministrativedatasetsforoutcomesassessmentinafollowupstudyofparticipantsfromtworandomisedtrials
AT lenajacob timeandcostoflinkingadministrativedatasetsforoutcomesassessmentinafollowupstudyofparticipantsfromtworandomisedtrials
AT gregdgamble timeandcostoflinkingadministrativedatasetsforoutcomesassessmentinafollowupstudyofparticipantsfromtworandomisedtrials
AT fortheanchorstudygroup timeandcostoflinkingadministrativedatasetsforoutcomesassessmentinafollowupstudyofparticipantsfromtworandomisedtrials