Health-RI wiki v4.0 -> consultatie (open tot 03-12-2024)

Storyline: Request data

Owned by Health-RI
Nov 18, 2024
3 min read

VERSIon: 12-11-2024 STATUS: FOR REVIEW

This article describes the storyline Request data.

The data user can start a data access request for (a subset of) one or more datasets. In this storyline, the data access request is assessed and the datasets are made available to the data user by the data holder.

This storyline follows Storyline: Search data in metadata and is followed by Storyline: Grant access to data and the analysis storylines.

Comments

 The process diagram shows a positive effect of the process (the happy flow), in which the respective review committees have given consent for the use of the dataset(s).

Precondition

  • The data user has a research proposal (approved by his or her organization) to conduct a study and as part of that the local research review committee has reviewed and approved the study.

  • The data user knows

    • what data is needed

    • what type of safe processing environment is going to be used or whether a federated analysis is desired

    • who will deliver the secure processing environment at which location (when applicable)

    • how much storage is needed for the research

Process model

  1. The data user selects (a subset of) one or more datasets from the aggregated set of metadata of the data guide.

  2. The data user records a data access request including

    1. Identification and authentication of the data user(s)

    2. Indication of the desired datasets or the data providers

    3. The research design and the rationale (including, for example, the duration of the study) for the use of the desired datasets

    4. The desired analysis on the desired datasets in combination with any other data required for the analysis

    5. Safe processing environment to be applied with the help of the Tool Supplier

    6. Approval of the Local review committee launch research.

  3. The data access request is assessed by one or more data access committees.

  4. After assessing the terms of use of the dataset(s) and the data in the data access request, a data access permit is granted.

  5. A data provider draws up a contract and offers it to the submitter of the data access request

  6. The submitter of the data access request signs the contract

  7. After signing the contract, the data provider makes the requested data available to the data user according to the (contractually) agreed conditions.

This storyline is followed by Storyline: Grant access to data and subsequently by Storyline: Central analysis or Storyline: Federated Analysis.

Postcondition

  • The complete data access request has been registered and assessed by all the review committees involved

  • The data user has received feedback about the data access request

  • If the outcome is positive, a permit has been granted to use the requested data in the requested environment

  • The contracts have been signed

 

image-20241112-213038.png
Process diagram “Request data”

This storyline uses the following business objects:

  • Selected dataset: a dataset that is considered suitable to serve as a source for a study

  • Data access request: a request for permission to use data or datasets for a study

  • Terms of use: conditions that are attached to a dataset and that determine when (and how) the dataset in question may be reused

  • Data access permit: a positive decision on a data access request

  • Contract: an agreement that is concluded between the data user and data provider and that sets out conditions for the use of requested data.

  • Research proposal: A research proposal is a structured document that forms the basis for planning and conducting a research.