Page Comparison

⚠️ The process described below is subject to change

Actors

...

Researcher Alice, PhD student at Radboudumc

...

(FAIR) data steward Jack at Radboudumc (Radboud Technology Center Data Stewardship (RTC-DS) / local data steward at Radboudumc)

Description

<Person> is owner (?) of a biobank and wants to make it Findable in the HRI Catalogue?

How does this work? E.g.

• Are biobanks registered internally (e.g. OpenSpecimen) and is data from OpenSpecimen made available (e.g. automatically) in an FDP and then harvested by the HRI catalogue?

• Do we need to make a distinction between a De Novo biobank and a biobank with material collected for healthcare (nader gebruik)? Or will information from the latter never be available in the catalogue.

...

• Bob, manager of the biobank

• Jim, biobank coordinator

• Carrie, system engineer for PaNaMa

Description

Bob is the manager of the biobank and he wants to make the biobank Findable in the HRI Catalogue.

Conditions

• <Person> has obtained consent for using There is informed consent to use the biomaterial for further research

• Alice has obtained informed consent for sharing/reusing the data

• The dataset has already been published in a data repository

  The dataset has a globally unique persistent identifier

User perspective

What’s the process in simple steps for our actor? Idea here is that someone who is creating a biobank or is the owner of one should be able to follow the steps, which would end in the biobank’s core metadata being available in the HRI catalogue.

1. ?

2. Probably still relevant:

   The FAIR objectives -

   Bob, the manager of the biobank, wants to make his biobank Findable in the HRI Catalogue.

   1. For more information about FAIR objectives, see Metroline: Define your objectives for making data FAIR

      1. The goal is to make the biobank Findable in the HRI Catalogue

      2. They discuss the requirements and Alice has all the information needed to fill out the minimal required metadata items - /wiki/spaces/FSD/pages/273350684 and Health-RI Metadata Schema

   2. The team requirements for achieving these objectives - Metroline: Build the Team

      1. Given the goal, they decide no additional expertise is required

   3. Whether further training is required to achieve these objectives - Metroline: Get Training

      1. Given the goal, they decide no further training is required

3. Then what? How does the biobank person (owner? data steward?) in the UMCG get the core metadata filled in and how does this become available in UMCG’s FDP? (Current situation, but we can also add something about the future)

4. Researcher fills the mapping table corresponding to the Health-RI Core Metadata Schema (with help from data steward) (Todo: if possible add reference to this table, empty + example)

5. Currently the data from this table is manually copied by the data steward to the form provided by the Radboudumc FDP (will be automated in the future)

   1. The form currently available in the FDP is not the one compliant with the HRI Core Schema.

6. Radboudumc FDP can be be harvested by the Health-RI National Catalogue, thereby making the dataset available in the HRI Catalogue (Findable)

1. Researcher Alice contacts Radboud Technology Centre Data Stewardship (RTC-DS) / local data steward for support.

2. (FAIR) data steward Jack and researcher Alice discuss

   1. The FAIR objectives - Metroline: Define your objectives for making data FAIR

      1. The goal is to make the dataset Findable in the HRI Catalogue

      2. They discuss the requirements and Alice has all the information needed to fill out the minimal required metadata items - /wiki/spaces/FSD/pages/273350684 and Health-RI Metadata Schema

   2. Doing a Pre-FAIR Assessment to discover the current FAIRness of the dataset - Metroline: Pre-FAIR Assessment

   3. The team requirements for achieving these objectives - Metroline: Build the Team

      1. Given the goal, they decide no additional expertise is required

   4. Whether further training is required to achieve these objectives - Metroline: Get Training

      1. Given the goal, they decide no further training is required

3. Researcher fills the mapping table corresponding to the Health-RI Core Metadata Schema (with help from data steward) (Todo: if possible add reference to this table, empty + example)

4. Currently the data from this table is manually copied by the data steward to the form provided by the Radboudumc FDP (will be automated in the future)

   1. The form currently available in the FDP is not the one compliant with the HRI Core Schema.

5. Radboudumc FDP can be be harvested by the Health-RI National Catalogue, thereby making the dataset available in the HRI Catalogue (Findable)

...

1. Bob delegates this task to Jim, a biobank coordinator.

2. Jim registers the biobank in PaNaMa following normal procedures.

   1. This information includes the information that is necessary for the HRI Core Metadata

3. Jim gives permission to share the data with the local FDP

4. Carrie creates a manual export from PaNaMa.

5. She makes the export available for Euphoria (Research Data Platform).

   1. Euphoria is where the data should come together.

6. The local FDP reads the data from Euphoria.

7. The FDP can now be harvested by the HRI Catalogue.