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Cochrane Evidence Synthesis and Methods
Article . 2023 . Peer-reviewed
License: CC BY
Data sources: Crossref
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PubMed Central
Article . 2023
License: CC BY
Data sources: PubMed Central
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Responsibilities for receiving and using individual participant data

Authors: Kylie E. Hunter; Aidan C. Tan; Angela C. Webster; Daniel G. Hamilton; Adrian Barnett; Lee Jones; Myra Cheng; +6 Authors

Responsibilities for receiving and using individual participant data

Abstract

AbstractBackgroundSharing of individual participant data enhances the value of existing data to generate new evidence and inform decision‐making. While there is strong in‐principle support for data sharing, in practice study data are often difficult to find, access, and re‐use. Currently, there is no consensus statement to guide the data‐sharing process. In particular, more guidance is needed on the responsibilities of data recipients for re‐using individual participant data.PurposeTo determine views on the responsibilities of recipients of study data, and to propose how these responsibilities could be met.MethodsA 2‐h online focus group was conducted at the 2021 Association for Interdisciplinary Meta‐research and Open Science conference. Three example data‐sharing scenarios were discussed (evidence synthesis, study reproducibility, and secondary analyses). Notes and audio transcripts were collated using thematic analysis and shared with attendees for further iterative input.ResultsA purposive sample of 16 conference delegates attended the focus group. Analyses revealed four recurring themes that were synthesized into recommendations. The “privacy and ethics” theme described the need for data recipients to prioritize the protection of participant privacy, and the recommendation to proactively share a secure data management plan and evidence of ethical oversight with the data provider. The “capability and resourcing” theme required recipients to demonstrate sufficient capacity to process and analyze study data. The “recognition and collaboration” theme asserted the responsibility to acknowledge the contributions of data providers and invite them to contribute to the secondary project. Last, the “compliance” theme focused on the responsibility to adhere to local data sharing regulations.ConclusionsSuccessful data sharing and re‐use requires cooperation from multiple stakeholders. We identified the responsibilities of recipients of study data to the individual from whom data arose and the research team who collected the data. Implementation of these in practice could facilitate increased data sharing.

Country
Australia
Keywords

610, Research Article

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    selected citations
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    This is an alternative to the "Influence" indicator, which also reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).
    3
    popularity
    This indicator reflects the "current" impact/attention (the "hype") of an article in the research community at large, based on the underlying citation network.
    Top 10%
    influence
    This indicator reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).
    Average
    impulse
    This indicator reflects the initial momentum of an article directly after its publication, based on the underlying citation network.
    Average
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selected citations
These citations are derived from selected sources.
This is an alternative to the "Influence" indicator, which also reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).
BIP!Citations provided by BIP!
popularity
This indicator reflects the "current" impact/attention (the "hype") of an article in the research community at large, based on the underlying citation network.
BIP!Popularity provided by BIP!
influence
This indicator reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).
BIP!Influence provided by BIP!
impulse
This indicator reflects the initial momentum of an article directly after its publication, based on the underlying citation network.
BIP!Impulse provided by BIP!
3
Top 10%
Average
Average
Green
gold