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9/9/22 Public Health Data Systems Task Force Meeting - Shared screen with speaker view
Arien Malec
@Steve -- can you speak without slides to the experience you had on the provider side getting eCR up and running?
Leslie Lenert
Mike Berry (ONC)
Meeting materials can be found here: https://www.healthit.gov/hitac/events/public-health-data-systems-task-force-2022-9
Leslie Lenert
Gillian: can you talk about the trade offs between high precision definitions and a best estimate of actual case counts in a region?
Hans Buitendijk
For OIDS, we should consider national networks as well to have relevant OIDs in directories for PH use as the PH use cases are being build out, not only addresses. Alternatively, as CDC has established OIDS for IIS-s, is there an opportunity for CDC to enable look-ups? Challenge will always be keeping it up-to-date as we unfortunately see with all types of identifiers and addresses.
Steven (Ike) Eichner
The list of reportable conditions may vary by jurisdiction, supporting variations in health issues across the country.
Arien Malec
Please tag comments to "Everyone" rather than “Hosts and Panelists" to better support public participation…
Joe Gibson
There are still many challenges in getting eCR data to local (vs. state) public health agencies. 13 local jurisdictions is a small number of US cities, let alone the 2500+ local public health agencies. Many of the smallest agencies may use state systems to do reportable disease surveillance, but moderate-to-large size local PH agencies may have their own systems.
Bryant T Karras
@Les i believe that RCKMS and AIMS does not de-duplicate or track over time. so case definition of repeat presentation within 90 days may not be taken into account. State and Local will need to determine
Annie Fine
Joe, do you think all 2500 local public health agencies should be able to process these relatively complex documents? I would think that local PHAs should have access to some of the data received but not necessarily to every eCR - there is a very high volume of data that need to be filtered, mapped, deduplicated, etc. I would think those processes should be somewhat centralized or shared - although it would be great if local PHAs could receive both structured data and possibly a subset of the eCRs in human readable format too. But it seems like a lot of data processing at the local level to have all local PHAs to receive all eCR. Curious what you think!
Leslie Lenert
Yes…some kind of embedded standard to deduplicate and integrate reports is imporrant (think Datavant or other PP linkage methods)
Annie Fine
Deduplicating, grouping, filtering - all could be shared services
Leslie Lenert
Steve==can you comment on maintaining trigger codes and reporting data in the CCD sent to public health?
John Kansky
To Joe and Annie... robust HIEs can supplement the technical capabilities of LHDs and help them meet needs like the one you call out
John Kansky
I hope to comment later on the need to accommodate *both* the direct from EHR path and the via HIE/HIN intermediary path. The same automation of trigger codes being described also exists via HIEs (e.g. communicable disease reporting)
Abby Sears
+1 for Les's comments
Abby Sears
I agree wholeheartedly with needing one standard.
Arien Malec
I'll just repeat making sure we have a common floor....
Hans Buitendijk
Having a common knowledge source, as demonstrated, can enable different paths: eCR Now on FHIR App, Embedded in EHR/HIT, HIE/HIN Intermediary. The eCR approach has further opportunities to expand on triggers and tailed eICRs based on trigger and source. The latter is relevant as eCR has the opportunity to reduce burden of other workflows, e.g., laboratory results ordering/reporting.
Joe Gibson
@Annie - While most local PHAs would not want to get eCR, many do. As PH informatics improves, I expect that number will grow - I think we all hope that it will, that this data will be used more and more to improve PH at the local level. With case reporting shifting to an electronic stream that goes directly to state HDs, LHDs that had more advanced reportable disease systems now have less direct access to some of this information.
Steven (Ike) Eichner
One potential method of advancing OID association with providers would be to tie it to licensing (get an OID as part of receiving a license- leveraging the licensing process.
Hans Buitendijk
HELIOS is focusing on optimization and alignment of data streams, including what to send/push and how to query for additional data. Query only is not necessarily the only answer for PH to access relevant data. Triggers are important to seed initial data sets and need to investigate further.
Arien Malec
standardizing case reporting push does not mean that PH can not query. These are not either/or.
Steven Lane
Early in the pandemic we developed and delivered a Carequality policy to allow PH jurisdictions to query for CCDs using established IHE protocols to support case investigation but only one jurisdiction took advantage of it for a limited use case. We CAN leverage available networks and the existing framework to support more robust queries via C-CDA and FHIR for USCDI data and beyond.
Jamie Pina
@ErinHolt raises an essential point: be cautious not to conflate "Reportable" and "Notifiable"
Hans Buitendijk
It is indeed never either/or, rather balancing both.
Laura Conn
@Arien yes, doing follow up via query for condition specific data could be very beneficial
Arien Malec
likewise CommonWell & eHX -- we had nationwide networks opening arms to public health but poor ability to uptake and adopt -- should contemplate certification criteria to participate in TEFCA-enabled query.
Bryant T Karras
data quality is a real issue
Steven Lane
There has been understandable reluctance on the part of providers to respond to queries from Public Health, based on the HIPAA Minimum Necessary requirement related to non-Treatment queries. We worked hard to get guidance from HHS OCR that PH queries in the context of the pandemic be declared Minimum Necessary, but we were unsuccessful in getting this. Instead we were left requesting individual states or jurisdictions to make this declaration, but very few were able to make this happen. As OCR is working on HIPAA updates we should try to assure that new rules support more robust allowances/requirements for providers to respond to queries from PH, be they via C-CDA documents or FHIR resources.
Gillian Haney
good point Steve.
Arien Malec
endorse -- we called for this (clear OCR guidance on minimum necessary for query) early in as part of the Duke-Margolis work back in April/May 2020…
Laura Conn
We do have eCR flowing using HIEs in several jurisdictions.
Jim St.Clair
Good discussion, FYI the NIH All of Us Program had an RFI about public health/pop health data from HIEs and it seemed pretty clear they don't fully understand what is flowing through HIEs at present, exp variability btwn HIEs
Bryant T Karras
many EMR EHRs only want to support DIRECT which is not HIE (IHE standard) compatible
Steven (Ike) Eichner
HIE participation, as a percentage of providers in any given area, may vary significantly across the US.
Jim St.Clair
+1 Steven
Leslie Lenert
@steve. FHIR resources seem an apt way to define “minimum necessary” data for PH inqurry
Arien Malec
The minimum necessary issue is that it leaves the definition of minimum necessary to the local PH authority -- for a nationwide reporting fabric, we want to ensure that there is broad deeming that reporting via USCDI to an authorized PH authority request meets the minimum necessary requirement.
Ann Kayser
HIEs tend to be at the state/jurisdictional level. When healthcare organizations cross state lines, there is also some complexity on how this should go to the central platform.
Laura Conn
PH has identified the data in the eICR as minimum necessary for eCR.
Steven Lane
Yes, the advantage of FHR-based queries from PH to providers (including labs, imaging providers, etc.) could /should be deemed to be Minimum Necessary if we, as a country, can simply agree that, if a jurisdiction requests a piece of data they do so because it is Necessary. All of the data represented in USCDI and more would then be available for real time access, even in response to automated queries triggered by a received eCR, eLR or Syndromic Surveillance message.
Joe Gibson
In Indianapolis, where HIE participation is very high, the Marion County PH Dept (Indianapolis) was able to use the HIE as a portal to review partial medical records of potential cases of reportable diseases. Having a clinical background, the PH nurses were able to interpret notes and other fields, avoiding the challenges of having to have that information standardized. This is a very different approach that the automated AIMS & RCKMS-mediated eCR reporting, but had a lot of efficiencies while keeping flexibility. Not something I'd imagine would be a national approach, but valuable where it is possible (thanks to the region's HIE).
Steven (Ike) Eichner
The federal Department of Health and Human Services has this information regarding minimum necessary: https://www.hhs.gov/hipaa/for-professionals/privacy/guidance/minimum-necessary-requirement/index.html
Leslie Lenert
There are numerous advantages to case reporting and investigation as well as outbreak tracking through HIEs
Jim St.Clair
Just curious, has this yet translated to asks from HIEs?
Rachelle Boulton
For those interested, Utah has a publication about our experience with a pilot eCR implementation. This occurred before the eICR standard and AIMS/RCKMS centralization, but the overall process is similar. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6788887/
Erin Holt
Recent report from CSTE that might be helpful- https://preparedness.cste.org/wp-content/uploads/2022/04/RaceEthnicityData_FINAL.pdf
Lesliann Helmus
OMB is in process of developing recommendations for race/ethnicity: https://www.whitehouse.gov/omb/briefing-room/2022/06/15/reviewing-and-revising-standards-for-maintaining-collecting-and-presenting-federal-data-on-race-and-ethnicity/
Gillian Haney
Thanks Erin!
Steven Lane
@ Jim - We should consider creating a list of asks from HIEs. What that we had a standard definition of Health Data Utility that included specific capabilities to support eCR and other Public Health Interoperability. I believe that many HIE/HIO/HINs would welcome a set of standards that would allow them to voluntarily demonstrate specific capabilities and which could be pointed to by regulation. Civitas is working on this presently.
Nedra Garrett
NCHS is working on publishing the latest update on R/E. Should be published in the relatively near future. I don't have a date.
Laura Conn
Oregon also has REALD requirements. https://www.oregon.gov/oha/OEI/Pages/REALD.aspx
Jim St.Clair
Excellent, @Steven, also sounds like a task for our Committee :)
Erin Holt
Agree Gillian. Taking strategic bites of the elephant as opposed to attempting to swallow the perfect elephant...
Steven (Ike) Eichner
PH interests include data quality and timeliness of reporting, Different conditions may have different reporting windows. It is important that public health receives notification in the specified windows to inform necessary response. Some conditions may require immediate notification. Others may have longer reporting windows. These timeframes are important whn considering generating and routing reports.
Jim St.Clair
I believe this is the last public mtg?
Joe Gibson
I'm wondering how we bring the large local PH agencies along in eCR, if they have not been involved in or funded for the AIMS RCKMS eCR system development, and then funding gets tied to having certified systems.