Short Description

How would you describe this track to promote participation? What's your two-sentence elevator pitch? (Avoid acronyms)

The intent of this track is to engage the FHIR and FAIR communities on the implementation of the FAIR (Findability, Accessibility, Interoperability, and Reuse) principles and FAIR health data objects by using HL7 FHIR. This objective will be pursuit by leveraging on existing HL7 FHIR implementation experiences.

Long Description

What's the purpose of hosting this connectathon track? What do you hope to achieve?

There is a growing interest, above all in the research communities, on FAIR data. The aspirational nature of principles however led to a wide range of interpretations of FAIRness. The FAIR principles by itself in fact do not strictly define how to achieve a state of FAIRness. 

To facilitate the implementation and  the assessment of FAIR health data by using HL7 FHIR, a new HL7 project (called FAIRness for FHIR) is going to be started: the first objective of this project is the development of a new FHIR IG (FHIR4FAIR) to support social and health data FAIRness.

This first edition of the FAIR track aims to engage the FHIR and FAIR communities on the implementation of the FAIR principles and the assessment of the FAIR indicators, by collecting and discussing implementation experiences, known challenges, and proposed solutions,.... This also by testing and supporting the refinement of existing project specific FHIR IGs as the EU funded FAIR4Health project.

The outcomes of this track will be used as first input for the development of the FHIR4FAIR FHIR IG.

Agenda

Proposed Scheduling (the schedule may change, the latest agenda is available on Whova)

Wednesday 13th

  • Kick-off FAIR Track - Wed - 8 am PT / 11 am ET / 17 CET 
  • Educational session: FAIR principles - Catherine Chronaki - Wed - 9 am PT / 12 am ET / 18 CET 

Thursday 14th

  • Break-out session: Sharing experiences - The FAIR4Health project - Alicia Martínez-García; Mert Gencturk; Anil Sinaci - Thursday - 6 am PT / 9 am ET / 15 CET (1h) 
  • Break out session: What are the main challenges to be addressed ? - Thursday - 8 am PT / 11 am ET / 17 CET (1h)
  • Educational session: RDA FAIR metrics - Oya Beyan - Thursday - 10 am PT / 13 ET / 19 CET

Friday 15th

  • Break-out session: Sharing experiences - Making Biomedical Research Informatics Computing System (BRICS) data FAIR - Olga Vovk - Fri - 6 am PT / 9 am ET / 15 CET (1h)
  • Break-out session: FAIR principles in the development of Evidence-related FHIR Resources - Brian S. Alper - Fri - 8 am PT / 11 am ET / 17 CET (1h)
  • FAIR track highlights Friday Fri - 9 am PT / 12 am ET / 18 CET (15 min)
  • FAIR track wrap-up Fri - 12 am PT / 15 ET / 21 CET

Type

Pick one: Test the design of a Resource/set of Resources, Test an Implementation Guide, Test a FHIR-associated specification, Educate on the use of a FHIR technology/IG

Educate on the use of a FHIR technology/IG (Test a FHIR-associated specification)

Submitting Work Group/Project/Accelerator/Affiliate/Implementer Group  

What group has responsibility for this track?

FAIRness for FHIR HL7 project (SOA WG) / FAIR4Health (EU funded project)

Proposed Track Lead

Name, email. Track leads must be registered users on https://chat.fhir.org

Alicia Martínez-García, alicia.martinez.garcia@juntadeandalucia.es

Giorgio Cangioli, giorgio.cangioli@hl7europe.org

Related Tracks

Provide links to other tracks that are likely to have overlap of use-cases and/or participants (used to help guide seating arrangements and possibly drive track consolidation)

FHIR Version

FHIR R4

Specification(s) this track uses

Please provide version-specific (ballot, release or official relesae) hyperlinks to the FHIR IG or other specifications implementers of this track will follow. If the relevant version does not exist yet, describe what it *will* be. (Hyperlink to actual version should be present no later than 1 month prior to connectathon.)

Artifacts of focus

Provide links to the resources, profiles, or other key artifacts that will be a focus for the connectathon.

Clinical input requested (if any)

N/A

Does your track have a need for input from the clinical community? If so, what are the needs?

Patient input requested (if any)

N/A

Does your track have a need for input from the patient/care-giver community? If so, what are the needs?

Expected participants

Who do you expect to be present? How many do you expect to attend?

Expected participants:

  • Scientific community
    • FAIR researchers
      • FAIR projects
      • FAIR-connected organizations (e.g. EOSC; RDA;..)
    • Data science researchers
    • Software engineering researchers
    • University community
  • Health providers
    • Health data owners
    • Health policy makers
    • Health data stewards
    • Health data curators
  • Developers and/or integrators
  • EHR-S vendors
  • Pharma organizations

We expect to have at least 5-10 participants.

Zulip stream

https://chat.fhir.org/#narrow/stream/267332-FAIR

Zoom Link

TBD

Track Orientation Date

December  17th  11:00 ET // 17:00 CET

https://global.gotomeeting.com/join/421902093

Track Orientation Details

Provide meeting information. Upload slides after the meeting. (Mandatory)

Slides

 

Presentation (mp4)

Track Details

As described in the introduction, this first edition of the FAIR track aims to engage the HL7 FHIR community on the implementation of the FAIR principles and the assessment of the FAIR indicators, by collecting and discussing implementation experiences, known challenges, proposed solutions, etc.

Describe each type of system that could participate in the track

Type of systems (system roles) that could participate in this track:

  1. Data source system:  system from which original data (raw data) are provided, and FAIR data are obtained / generated. Original data can be provided in different formats.
  2. Data analysis, curator and validator system: FHIR-based system allowing the selection of data, analysis, the authoring of metadata, the validation of FAIR data. This actor provides also capabilities for aggregating metadata such as provenance information, licences, versions, indexes, and/or other local metadata. (to be evaluated if these capabilities might be provided by a distinct  Metadata curation system)
  3. Data de-identification & anonymization system: FHIR-based system responsible for applying the requested procedure of de-identification & anonymization of  data before their publication.
  4. Data Semantic mapping system: FHIR-based system supporting model and terminology mapping.
  5. FAIR data registry/repository system: FHIR-based system supporting the consultation and the retrieval of FAIR data, in conformance with their conditions of use. 
  6. FAIR data consumer system: system consulting and retrieving FAIR data, in conformance with their conditions of use.

Please include information here regarding how much advance preparation will be required if creating a client and/or server. 

Describe the different scenarios participating systems can engage in during the connectathon. Each scenario should provide sufficient description that participants can appropriately construct their software in advance to prepare to interoperate during the connectathon. 

Indicate any test scripts that will be used to help verify system behavior. 

The following described scenarios participating systems can engage in during the connectathon, are provided for exemplification purposes; also others, realized by existing implementations, can be evaluated and discussed.

Technical scenarios:

  1. An agreed raw dataset are collected from data source systems and made available for analysis, curation, validation, semantic modeling, and/or metadata aggregation.
  2. Curated, validated, with appropriate metadata (including the condition of use), and semantic model data, are de-identified & anonymized as needed.
  3. Processed FAIR data are published in a FHIR-based FAIR repository.
  4. FAIR data are queried and retrieved by authorized consumers, in accordance with their conditions of use.

Functional scenarios:

  • (example) FAIR4Health use case #1: Characterization of multi-morbidity patterns and association with health outcomes in the elderly.
  • (example) FAIR4Health use case #2: Early prediction service for 30-days readmission risk in COPD patients.
  • (example) Sharing of COVID-19 patients dataset.

Identify any expectations around security (e.g. will TLS, mutual-TLS, OAuth, etc. be required to participate.

Security and Privacy Considerations:

  Taking into account we are going to perform testing using anonymized data from real patients, participants undertake to:
- Do not use the testing datasets for any other purpose than the Connectathon
- Remove the testing datasets at the end of the Connectathon.
- Do not make any attempt to re-identify patients.
  More information here.

References
  • Wilkinson, M. D., Dumontier, M., Aalbersberg, I. J., Appleton, G., Axton, M., Baak, A., ... & Bouwman, J. (2016). The FAIR Guiding Principles for scientific data management and stewardship. Scientific data, 3(1), 1-9.
  • Sinaci, A. A., Núñez-Benjumea, F. J., Gencturk, M., Jauer, M. L., Deserno, T., Chronaki, C., ... & Erturkmen, G. B. L. (2020). From Raw Data to FAIR Data: The FAIRification Workflow for Health Research. Methods of Information in Medicine, 59(S 01), e21-e32.
  • FAIR4Health project. Deliverable D2.1. Technical recommendations for the FAIR4Health platform and agents implementation. https://osf.io/huy9r/