| Time | Item | Who | Notes |
|---|
| Admin Kick off | Laura | - Please remember to log your attendance for any PH WG session you attend
- Remember a number of WG co-chair seats up for election in 2021
- Please reach out to a co-chair if you have any questions about the role or the nomination process
- Agenda as reviewed, no updates
- Note that Wednesday Q4 there is a Government Birds of a Feather session that may be of interest
|
| RBC Phenotyping | John Spinosa | - Presentation
- FHIR IG project proposal for extended RBC phenotyping
- Lantana supported project
- San Diego Blood Bank is genotyping donors for red blood cell donors
- Blood donor centers manufacture the products
- Regional blood banks are typically not-for-profit (eg Red Cross, Wisconsin Blood Center)
- They fall under FDA oversight and federal regulations
- Tend to be fragmented systems in the US
- Health system blood banks track the use of the products
- There is a Public Health role in reporting adverse events from transfusions
- Jean Duteau is working an IG in this area
- Data needs to be transferred from the donor centers to the health systems
- Health systems are rekeying the information
- The amount of data being conveyed is growing due to advances in molecular techniques
- The blood product inventory often doesn't stay local
- Product searches can be regional or national
- Donors can become patients, so this can be important for patient care too
- Proposal to develop a FHIR IG
- Supporters include the San Diego Blood Bank and HaploGNX
- Vendors are being contacted about joining
- Talking to O&O and Clinical Genomics WG as well as PH
- Possible use cases:
- Inventory management at the blood banks and health systems
- Optimize products for patient care
- Queries to blood bank suppliers
- Queries for specialized units, which tend to be manual (fax) today
- Can be used to track adverse events too
- It's not clear yet if the scope of data being exchanged will focus on phenotypic or genotypic data
- Will receiving systems typically use this information for documentation or will they need more discrete data to run logic on?
- Phenotypes typically are less granular than genotypes
- The phenotype may be more useful for most clinicians
- May need to be able to query for more discrete genotypic data (likely an edge case)
- Security and privacy considerations
- Will patient data be exchanged? What are the privacy/security considerations?
- There are a couple of different types of patients in the use cases
- The patient requiring the product
- The biological requirements for product shouldn't be particularly patient identifiable
- The donor if they ever become a patient and require care (and maybe products)
- Blood as a resource may fit in the SANER project
- The project team will put together a project proposal between now and the Sept WGM
- Reach out to John if you have additional questions
|
| Maternal and Infant Health Project | Ruby Nash/David DeRoode | -
PSS-1802
-
Getting issue details...
STATUS
- NIH sponsored Longitudinal Maternal and Infant Health Information for Research FHIR IG
- Dan Chaput at ONC has been working with NIH on this project
- Part of the larger PCOR project
- There is an interaction with USCDI as well
- There were many comments in Fall 2020 about adding pregnancy and delivery related data classes and data elements to USCDI (but they didn't make it into the draft Version 2)
- The project will have a TEP including folks from NCHS
- Data scope includes pregnancy, deliver and post-partum (~1 year) phase
- Primarily for research purposes
- 8 example use cases from NIH
- The goal is to develop a reusable infrastructure
- Not sure yet if this would be a Push versus a Query workflow (could be both)
- Both singular query and bulk query could be in scope
- Would be driven by the research question
- Could be subscription based too
- Is there an overlap with CodeX work on clinical trial and patient matching use case?
- Potentially a significant overlap with existing IGs (Vital Records, Birth Defects, MedMorph, case reporting, etc)
- Could be a MedMorph use case or a part of the US Public Health library
- The Vulcan Accelerator may also be relevant
|
