Aim

To make proper arrangements with third parties about the use of your data.

Description

Data from a research project may be made available to third parties. Such as fellow researchers, using the data for additional analysis purposes and publications. Always come to a written agreement with third parties about: What the party may and may not do with the data; Come to an agreement about co-authorships.

We employ a number of rules of thumb for our large cohort studies regarding the use of research data by third parties. These rules can be applied to all other EMGO+ projects.
The rules are based on the aim of the research:
1) If the research is intended for scientific publication, then the data may be used. Provided that someone from the project group is a co-author.
2) If it is not intended for scientific publication, but there is a public interest, then datasets will be made available. The time required to generate the set and provide advice will be subject to a charge. Public interest may be a report from the National Institute for Public Health and the Environment (RIVM), insurer, etc.
3) If there is no public interest, then a charge is applied per variable (sex, for instance, is a variable).

Ensure that the data are anonymous: Remove all confidential, privacy sensitive information. Have the third party produce a proposal for the data analysis ( example1, example 2). Agreements regarding the following should be made in writing, in a data analysis agreement ( Dutch example).
-     The data made available should only be used to answer the questions described in the data analysis proposal.
-     The data made available are and remain the property of .... (enter name of your project) research group. The data may not be used for other studies and should not be provided to third parties without written permission from the ... research group.
-     Results described in articles already written by the ... research group, but which have not yet been accepted for publication (add a list to this), may not be mentioned before the articles have been accepted for publication.
-     At least one member of the ... research group should be involved as a co-author of a scientific article or report.
-     All reports should include in the Acknowledgements the grant body of the ... research group where the data were collected.
-     If the time agreed is not adhered to, the ... research group will contact the third party to revise any potential agreements. This may involve a request for a revised proposal.

-           Example of a data analysis proposal 1 and proposal 2 (Dutch)
-           Example of a data analysis agreement (Dutch)

Third parties: All parties (both within as well as beyond EMGO+) that are not directly involved in the project.

V1.1: 1 Jan 2010: English translation.
V1.0: 31 Jan 2008: Extension with rules of thumb for various objectives.

1.         Is there a written agreement with the third party?
2.         Does this include the 5 points mentioned in details?
3.         Are all the data anonymised?