5.1 Draft guidelines on data description for health data holders
De publieke consultatie voor de eerste ronde van TEHDAS2 richtlijnen en specificaties is geopend. Vanuit Nederland gaan we deze feedback gezamenlijk geven. Voor correcte bundeling volgen de vragen in het Engels. Alvast dank voor je bijdrage.
Type of responder
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Academic or research organisation
Interest group
Individual citizen
Non-governmental organisation (NGO)
Patient representative
Public organisation
Private organisation
Other
Sector
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Data Management/processing
Education and academia
Government / public administration
Health care administration
Health care provider
Information & Media
Information technology
Legal and compliance
Manufacturer of medical devices
Patient advocacy
Pharmaceutical industry
Research and development
Other
Organisation size
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Micro (1–9 employees)
Small to medium enterprise (10–249 employees)
Large enterprise (250+ employees)
Not applicable / Individual citizen
Professional role / function
Name
First Name
Last Name
Email
example@example.com
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From your perspective, how ready is the document to meet the expected needs?
Early draft
Advanced draft
Well-developed
Needs finalisation only
What is the level of quality of the document [Rate 1 (not well) – 4 (very well)]
How well does the document address the key issues and challenges related to its subject matter? [Rate 1 (not well) – 4 (very well)]
How feasible and implementable do you find the recommendations or technical specifications presented in the document?* [Rate 1 (not feasible and implementable at all) – 4 (very feasible and implementable)]
Do you have any suggestions for improving the document? Are there any additional topics or areas that should be covered? [Please provide feedback and ideas for enhancing the document] [max. 750 characters]
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Are you a health data holder, according to the definition of the EHDS?*
Yes
No
Do you already share or expose your metadata?
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Yes
No
If yes, which metadata standard are you using?
If no, why not?
Do you already share or expose your metadata?
Yes
No
If yes, how?
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In your opinion, is the HealthDCAT-AP sufficient for health data holders to fully and accurately describe their datasets? [Rate 1 (not well) – 4 (very well)]
In what ways could the HealthDCAT-AP be tailored to better support the unique characteristics of (your) health datasets?
What aspects of (your) health datasets are most challenging to describe using HealthDCAT-AP?
How would you compare the HealthDCAT-AP to other metadata standards you have used/are using? What aspects stand out as strengths or weaknesses?
Type a question
Rows
Should be mandatory
Should be recommended
Should be optional
Should be mandatoryShould be recommendedShould be optionaldcat:keyword = Keywords or tags describing the dataset. – Current proposal: mandatory
dct:provenance = Information about how the data was collected, including methodologies, tools, and protocols used. – Current proposal: mandatory
dpv:hasPurpose = A free text statement of the purpose of the processing of data or personal data. – Current proposal: mandatory
dct:issued = The date of formal issuance (e.g.: publication) of the dataset. – Current proposal: optional
dct:modified = The most recent date on which the dataset was changed or modified. – Current proposal: optional
healthdcatap:populationcoverage = A definition of the population within the dataset. – Current proposal: recommended
dct:spatial = The geographic area covered by the dataset. – Current proposal: mandatory
dct:temporal = A temporal period that the Dataset Series covers. – Current proposal: recommended
dct:language = The language(s) of the dataset content. – Current proposal: recommended
healthdcatap:retentionPeriod = A temporal period which the dataset is available for secondary use. – Current proposal: optional
dct:accrualPeriodicity = Frequency of updates to the dataset (e.g., daily, monthly, annually). – Current proposal: recommended
dcat:spatialResolutionInMeters = The minimum spatial separation resolvable in a dataset, measured in meters. – Current proposal: optional
dcat:temporalResolution = The minimum time period resolvable in the dataset. – Current proposal: recommended
dct:publisher = The organisation or entity responsible for publishing the dataset. – Current proposal: mandatory
healthdcatap:publishertype = A type of organisation that makes the Dataset available. – Current proposal: mandatory
healthdcatap:publishernote = A description of the publisher activities. – Current proposal: optional
healthdcatap:hdab = Health Data Access Body supporting access to data in the Member State. – Current proposal: mandatory
dct:creator = An entity responsible for producing the dataset. – Current proposal: optional
dcat:contactPoint = Contact information for inquiries about the dataset. – Current proposal: mandatory
foaf:page = A page or document about this Dataset. – Current proposal: recommended
dcat:landingPage = A web page that provides access to the Dataset, its Distributions and/or additional information. – Current proposal: recommended
dcat:qualifiedRelation = A description of a relationship with another resource. – Current proposal: optional
prov:qualifiedAttribution = An Agent having some form of responsibility for the resource. – Current proposal: optional
prov:wasGeneratedBy = An activity that generated, or provides the business context for, the creation of the dataset. – Current proposal: optional
dqv:hasQualityAnnotation = Dataset, including rating, quality certificate, feedback that can be associated to the dataset. – Current proposal: recommended
dcat:hasVersion = A related Dataset that is a version, edition, or adaptation of the described Dataset. – Current proposal: optional
dcat:version = The version indicator (name or identifier) of a resource. – Current proposal: optional
adms:versionnotes = A description of the differences between this version and a previous version of the Dataset. – Current proposal: optional
dcat:isVersionOf = inverse of dcat:hasVersion. – Current proposal: optional
dct:relation = A related resource. – Current proposal: recommended
dct:isReferencedBy = A related resource, such as a publication, that references, cites, or otherwise points to the dataset. – Current proposal: recommended
dct:source = A related Dataset from which the described Dataset is derived. – Current proposal: recommended
dpv:hasLegalBasis = The legal basis used to justify processing of personal data. – Current proposal: recommended
adms:identifier = A secondary identifier of the Dataset, such as MAST/ADS17, DataCite18, DOI19, EZID20 or W3ID21. – Current proposal: optional
dcat:theme = The theme or category of the dataset: Health (M by default, with the option to add other themes). – Current proposal: mandatory
dcatap:applicableLegislation = The legislation that mandates the creation or management of the Dataset. – Current proposal: mandatory
healthdcatap:healthCategory = The health category to which this dataset belongs as described in the EHDS Article 51. – Current proposal: mandatory
healthdcatap:healthTheme = A category of the Dataset or tag describing the Dataset. – Current proposal: mandatory
dct:type = A type of the Dataset: for health datasets containing personal level information, the type of the dataset MUST take the value "personal data". – Current proposal: mandatory
dpv:hasPersonalData = Key elements that represent an individual in the dataset. Example: Age Exact, Blood type, Current Employment, etc. – Current proposal: recommended
dct:conformsTo = An implementing rule or other specification. – Current proposal: recommended
healthdcatap:hasCodingSystem = Coding systems in use (ex: ICD-10-CM, DGRs, SNOMED=CT, ...). – Current proposal: recommended
healthdcatap:minTypicalAge; healthdcatap:maxTypicalAge = Minimum/maximum typical age of the population within the dataset. Current proposal: recommended
healthdcatap:numberOfRecords = Size of the dataset in terms of the number of records. – Current proposal: recommended
healthdcatap:numberOfUniqueIndividuals = Number of records for unique individuals. – Current proposal: recommended
dcat:distribution = An available distribution for the dataset. For personal electronic health data, a distribution must include the landing page of the Health Data Access Body supporting data access. – Current proposal: mandatory
adms:sample = A sample distribution of the dataset. – Current proposal: mandatory
healthdcatap:analytics = An analytics distribution of the dataset. – Current proposal: recommended
dct:identifier = The main identifier for the Dataset, e.g. the URI or other unique identifier in the context of the Catalogue. – Current proposal: mandatory
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How adequate do you find the HealthDCAT-AP standard for describing (your) health datasets? [Rate 1 (not well) – 4 (very well)]
Are there specific challenges you will face in the implementation of HealthDCAT-AP?
How do you foresee using the HealthDCAT-AP standard to improve data discoverability and interoperability?
On a scale of 1 to 4, how clear did you find the guideline on data description?* [Rate 1 (not clear) – 4 (very clear)]
What improvements would this guideline need in order to be clear and useful?
What kind of additional support, such as training, documentation, or tailored tools, would help you better adopt the standard?
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