Posted by Shaily Krishan · Nov 15, 2022 at 8:50 PM

Feedback Requested: Splitting vs. Grouping Conditions in RCKMS

The RCKMS Content Team is looking for feedback about the structure of some conditions in RCKMS. We have received requests to “split” various conditions into separate conditions with individual Reporting Specifications (RS). For example, splitting Streptococcal disease, invasive into Streptococcal disease, invasive, Group A and Streptococcal disease, invasive, Group B; or adding individual RS for Jamestown Canyon virus disease, La Crosse virus disease, Snowshoe hare virus disease, Trivittatus virus disease, and Keystone virus disease in addition to California Serogroup Virus Disease.

Please also briefly describe any pros and cons for the approach you prefer, such as benefits for eICR processing at the jurisdiction level, ease of authoring in RCKMS, etc.
Please note that the approach to “split” conditions may result in re-authoring existing conditions or increased authoring needs due to the conditions being separated

Some questions/ information about conditions under consideration are listed below:

1. HIV

HIV is currently available as a single condition in RCKMS, but could be split into 3 conditions:
- HIV infection or AIDS, Adult
- HIV infection or AIDS, Pediatric
- HIV, Perinatal Exposure
Would your jurisdiction rather have HIV remain a single condition in RCKMS, or split into 3 conditions for adult, pediatric, and perinatal exposure?

2. Influenza

The following influenza-related conditions are currently available in RCKMS:
- Influenza-Associated Hospitalizations
- Influenza-associated pediatric mortality
- Influenza-like Illness (ILI)
- Novel Influenza A Virus Infection
The following influenza-related conditions are in discussion to be added to RCKMS:
- Influenza (for jurisdictions where all influenza cases are reportable)
- Influenza-Associated Mortality (for jurisdictions interested in all influenza deaths)
Would your jurisdiction rather see a single Influenza condition in RCKMS with various criteria available for age, pregnancy, hospitalization, and mortality; or keep the individual, more specific influenza-related conditions?

3. Prion Disease

A reporting specification for Creutzfeldt-Jakob Disease and Variant Creutzfeldt-Jakob Disease is currently available in RCKMS.
- This RS is specific to CJD/vCJD and does not include other (even more rare) prion diseases such as Gerstmann-Straussler-Scheinker Syndrome and Fatal Familial Insomnia.
The RCKMS team is currently considering another RS for “Human Prion Disease” that would be inclusive of the other prion diseases.
Would your jurisdiction prefer to maintain CJD/vCJD as a separate RS from the other prion diseases, or would you prefer that we modify and rename the existing CJD/vCJD RS so that we move forward with a single RS that includes all prion diseases?

4. What are some pros & cons of grouping related conditions in RCKMS (more inclusive approach)?

5. What are some pros & cons of splitting related conditions in RCKMS (more specific approach)?

We request that one person from each jurisdiction respond to these questions by Friday, December 2.

Your preferences will help inform CSTE's approach to grouping vs splitting conditions in RCKMS & we appreciate any feedback you can provide!

Comments & Events

Sara Mader

Thank you for the opportunity to provide feedback!

1. HIV

HIV is currently available as a single condition in RCKMS, but could be split into 3 conditions:

HIV infection or AIDS, Adult
HIV infection or AIDS, Pediatric
HIV, Perinatal Exposure

Would your jurisdiction rather have HIV remain a single condition in RCKMS, or split into 3 conditions for adult, pediatric, and perinatal exposure?

WI would vote to have HIV remain a single condition. We do not split out pediatric HIV in our database. So for this one it would be more work for us to keep up 3 conditions in RCKMS that all flow to the same condition in our database (WEDSS).

2. Influenza
The following influenza-related conditions are currently available in RCKMS:

Influenza-Associated Hospitalizations
Influenza-associated pediatric mortality
Influenza-like Illness (ILI)
Novel Influenza A Virus Infection

The following influenza-related conditions are in discussion to be added to RCKMS:

Influenza (for jurisdictions where all influenza cases are reportable)
Influenza-Associated Mortality (for jurisdictions interested in all influenza deaths)

Would your jurisdiction rather see a single Influenza condition in RCKMS with various criteria available for age, pregnancy, hospitalization, and mortality; or keep the individual, more specific influenza-related conditions?

WI would prefer to keep these separate. We would not need the new ones, but would just not author them. The reason is that only Novel flu A, flu associated hospitalizations, and pediatric flu associated deaths are reportable in WI. So it is really nice to be able to set up parameters for those specific areas, and then have those eCRs flow into our system as those specific conditions. If we had them all as one in RCKMS, they would all flow in as the same disease in our system and it would take extra work for our local users to figure out what is being reported. I could see doing one single flu mortality condition with an age component. Doing that would be easy enough and are similar criteria.

3. Prion Disease

A reporting specification for Creutzfeldt-Jakob Disease and Variant Creutzfeldt-Jakob Disease is currently available in RCKMS.
This RS is specific to CJD/vCJD and does not include other (even more rare) prion diseases such as Gerstmann-Straussler-Scheinker Syndrome and Fatal Familial Insomnia.

The RCKMS team is currently considering another RS for “Human Prion Disease” that would be inclusive of the other prion diseases.

Would your jurisdiction prefer to maintain CJD/vCJD as a separate RS from the other prion diseases, or would you prefer that we modify and rename the existing CJD/vCJD RS so that we move forward with a single RS that includes all prion diseases?

WI would vote yes to the more inclusive definition, Human Prion disease, for this one. In WEDSS we have Transmissible spongiform encephalopathy, which includes all prions. So it would be easiest for us regarding how we have it flow into WEDSS and that we track a more broad category of diseases.

4. What are some pros & cons of grouping related conditions in RCKMS (more inclusive approach)?

We are open to it, when it makes sense. There are some diseases that are so rare and then can get grouped together into categories. Then easier to update one condition in RCKMS too. It is so dependent on what disease(s) it is.

5. What are some pros & cons of splitting related conditions in RCKMS (more specific approach)?

I think this can be helpful to give us the flexibility to get really specific with reporting specifications. And some states, like WI, have diseases split out to different kinds so nice to send specific eCRs to specific diseases in WEDSS. This creates less work for our local partners who receive and evaluate all eCRs that come into the system. Certainly it is more to keep track of in RCKMS but that is less work then it would be for local users to decipher the eCR.

Nov 21, 2022 at 8:08 PM Notified 281 people

Benjamin Schram, Surveillance and Electronic Reporting System Coordinator – Epidemiologist III

1. HIV

Would your jurisdiction rather have HIV remain a single condition in RCKMS, or split into 3 conditions for adult, pediatric, and perinatal exposure?
- ND would prefer to have HIV remain a single condition. We use a single condition for HIV within our integrated surveillance system, so all three would flow to the same condition in our system. We can handle either situation without significant preference.

2. Influenza

Would your jurisdiction rather see a single Influenza condition in RCKMS with various criteria available for age, pregnancy, hospitalization, and mortality; or keep the individual, more specific influenza-related conditions?
- ND would prefer to have Influenza as a single condition. We use a single condition for Influenza within our integrated surveillance system, so all separate conditions would flow to the same condition in our system. We can handle either situation without significant preference.

3. Prion Disease

Would your jurisdiction prefer to maintain CJD/vCJD as a separate RS from the other prion diseases, or would you prefer that we modify and rename the existing CJD/vCJD RS so that we move forward with a single RS that includes all prion diseases?
- ND would prefer to maintain CJD/vCJD as separate from other prion diseases, as these are different conditions. We can separate in mapping if needed, so we can handle either situation without significant preference.

4. What are some pros & cons of grouping related conditions in RCKMS (more inclusive approach)?

Grouping related conditions (such as prions) adds an additional step in mapping to split into different conditions within our surveillance system. Within the same disease, however, keeping all items from a single disease together reduces effort in mapping.

5. What are some pros & cons of splitting related conditions in RCKMS (more specific approach)?

Splitting conditions reduces steps in mapping when the conditions are for different diseases. When the conditions are for a single disease, splitting adds an additional step in mapping.

Nov 25, 2022 at 4:16 PM Notified 281 people

Melanie Epstein-Corbin, CA eCR Lead

1. HIV: Would your jurisdiction rather have HIV remain a single condition in RCKMS, or split into 3 conditions for adult, pediatric, and perinatal exposure?

CA would prefer to have a single HIV condition. Rhapsody routes any messages containing a LOINC for HIV straight to our Office of AIDS. We could setup the catch to meet the single or split conditions, but our preference is to HIV as a single condition.

2. Influenza: Would your jurisdiction rather see a single Influenza condition in RCKMS with various criteria available for age, pregnancy, hospitalization, and mortality; or keep the individual, more specific influenza-related conditions?

CA would prefer to have a single Influenza condition. In CA only Influenza-associated deaths in lab confirmed cases less than 18 and Novel strains are reportable. Despite the potential limitations that WI had mentioned with a single flu condition which are the same for CDPH (eg: all conditions would flow in as the same disease in our system), our SMEs have suggested that having one single influenza condition allows for greater flexibility in what we may receive, and allows us to scale up or back on what we receive via eCR as flu reporting regulations change or if there is a pandemic and we want/need everything for a period of time.

3. Prion: Would your jurisdiction prefer to maintain CJD/vCJD as a separate RS from the other prion diseases, or would you prefer that we modify and rename the existing CJD/vCJD RS so that we move forward with a single RS that includes all prion diseases?

CA would prefer to have a single RS that includes all prion diseases. Other than CJD, the other prion diseases are quite rare, so the more inclusive condition level is preferred for broader capture.

4 & 5 - we agree with comments made by WI & ND.

Nov 29, 2022 at 9:10 PM Notified 281 people

Virginia Warren

We are seeking input on whether your jurisdiction prefers to author conditions (and receive eICRs and RRs) at a higher/ more inclusive condition level (e.g., Influenza) or at a more granular/ specific condition level (e.g., Influenza-Associated Hospitalizations) in RCKMS. Please also briefly describe any pros and cons for the approach you prefer, such as benefits for eICR processing at the jurisdiction level, ease of authoring in RCKMS, etc. Please note that the approach to “split” conditions may result in re-authoring existing conditions or increased authoring needs due to the conditions being separated.

In general, I would say the best approach depends on the level of granularity of the state notifiable condition. The greater the alignment between the RCKMS specification and the state notifiable condition, the easier it is to process the condition into the surveillance system, right? To illustrate, if there were only an Influenza RS available, and the state notifiable condition is Influenza-associated hospitalizations, there'd be more processing work to figure out than if a more granular approach to the specifications was taken. If the state in this example didn’t figure out how to extract the eICRs that were likely associated with hospitalization (e.g,, by pulling the ‘encounter type’ or using the ‘determination of reportability’ somehow—although that might be difficult because ‘determination of reportability’ doesn’t seem to be codified), investigators would be inundated with case reports they did not need, increasing their burden.

Since states vary in what conditions are reportable, the utilitarian approach would seem to be to go granular. If the burden of “going granular” was very high for the RCKMS team, common diseases could be prioritized for getting the granular treatment over rare diseases—as suggested by Sara Mader. I say this while at the same time voting for the "inclusive" approach on some of the diseases in question based on Washington-specific needs.

1. HIV
Would your jurisdiction rather have HIV remain a single condition in RCKMS, or split into 3 conditions for adult, pediatric, and perinatal exposure?

I reached out to our HIV SMEs for an assessment on this one, and they would like to keep it as one condition for “simplicity’s sake.”

2. Influenza
Would your jurisdiction rather see a single Influenza condition in RCKMS with various criteria available for age, pregnancy, hospitalization, and mortality; or keep the individual, more specific influenza-related conditions?

WA Influenza SME prefers a granular approach to this condition. (“Influenza” in general is not reportable in WA. However, "Influenza, novel or unsubtypable strain” is along with “Influenza-associated mortality.”)

3. Prion Disease
Would your jurisdiction prefer to maintain CJD/vCJD as a separate RS from the other prion diseases, or would you prefer that we modify and rename the existing CJD/vCJD RS so that we move forward with a single RS that includes all prion diseases?

Since our surveillance system only has one bucket for “Prion Disease,” and since, according to our SME, we can’t truly positively verify a prion diagnosis (including what kind of prion disease we’re dealing with) until after death, it would be fine to modify and rename the existing CJD/vCJD RS for WA.

4. What are some pros & cons of grouping related conditions in RCKMS (more inclusive approach)?

Con to the inclusive approach is that processing can be more difficult. E.g. You might have to route eICRs based off a criteria indicator (e.g., determination of reportability, which does not appear to be reliably codified) instead of the SNOMED code associated with the reporting specification.

Pro to inclusive approach is that there are fewer reporting specs to maintain and possibly less opportunity for confusion related to criteria that may overlap across specifications when the granular approach is taken??

5. What are some pros & cons of splitting related conditions in RCKMS (more specific approach)?

Pros of splitting conditions:
-More flexibility to accommodate a variety of states’ needs.
-Conducive to processing only the eICRS a state needs into its surveillance system rather than a bunch of noise if informatics teams can’t figure out how to filter “the noise” out using integration engine (e.g. Rhapsody).
-Decreases burden of figuring out how to filter through noise in Rhapsody/surveillance system for informatics teams.

Con to splitting conditions
-Some states who don’t need the granular approach on a particular condition have to deal with complexity created by the needs of others.

Nov 30, 2022 at 12:57 AM Notified 281 people

Shaily Krishan, Program Manager

Hi everyone,

This is a friendly reminder to please respond to the posted questions by Friday, December 2 - your feedback is very important to us!

Many thanks to those who have provided feedback already!

Nov 30, 2022 at 1:46 PM Notified 281 people

Tara Fleckner, Surveillance Epidemiologist

1. HIV

HIV is currently available as a single condition in RCKMS, but could be split into 3 conditions:
- HIV infection or AIDS, Adult
- HIV infection or AIDS, Pediatric
- HIV, Perinatal Exposure
Would your jurisdiction rather have HIV remain a single condition in RCKMS, or split into 3 conditions for adult, pediatric, and perinatal exposure?

MADPH would prefer that the HIV reporting specification guide be kept as a single condition. We do have the ability to send each reportable condition code to the same product code in our system, but seeing as we don’t currently have separate product codes by age group or perinatal exposure in our surveillance system, we would prefer this be kept a single condition for now to prevent the need for that additional mapping.

2. Influenza

The following influenza-related conditions are currently available in RCKMS:
- Influenza-Associated Hospitalizations
- Influenza-associated pediatric mortality
- Influenza-like Illness (ILI)
- Novel Influenza A Virus Infection
The following influenza-related conditions are in discussion to be added to RCKMS:
- Influenza (for jurisdictions where all influenza cases are reportable)
- Influenza-Associated Mortality (for jurisdictions interested in all influenza deaths)
Would your jurisdiction rather see a single Influenza condition in RCKMS with various criteria available for age, pregnancy, hospitalization, and mortality; or keep the individual, more specific influenza-related conditions?

MADPH would prefer to keep the individual, specific influenza-related conditions as there is much variability between states in what is reportable for flu. Currently, only Novel Flu A, Pediatric Flu Deaths, and Influenza labs are reportable to MA.

3. Prion Disease

A reporting specification for Creutzfeldt-Jakob Disease and Variant Creutzfeldt-Jakob Disease is currently available in RCKMS.
- This RS is specific to CJD/vCJD and does not include other (even more rare) prion diseases such as Gerstmann-Straussler-Scheinker Syndrome and Fatal Familial Insomnia.
The RCKMS team is currently considering another RS for “Human Prion Disease” that would be inclusive of the other prion diseases.
Would your jurisdiction prefer to maintain CJD/vCJD as a separate RS from the other prion diseases, or would you prefer that we modify and rename the existing CJD/vCJD RS so that we move forward with a single RS that includes all prion diseases?

MADPH would vote to have the CJD/vCJD reporting specification guide be modified into a single “Human Prion Disease.” Currently, we very rarely see CJD/vCJD and those cases are usually reviewed on a case-by-case basis by our State Epidemiologist. Having this reporting specification guide expand to Human Prion Disease would allow for broader capture of the rarer diseases.

4. What are some pros & cons of grouping related conditions in RCKMS (more inclusive approach)?

Pros:

- Grouping conditions allows for broader capture of diseases like Human Prion Disease that are ultimately quite rare for jurisdictions to see.

Cons:

- Different jurisdictions have different reporting requirements and processes for reporting, which may make mapping of information (labs, results, condition codes) more difficult.

5. What are some pros & cons of splitting related conditions in RCKMS (more specific approach)?

Pros:

- As mentioned above, different jurisdictions have different requirements and processes for reporting, which extend to different disease criteria (age requirements, hospitalizations, chronic/acute status, etc). By splitting conditions, there is an opportunity to become very granular in the type of information that is being captured by RCKMS without having to dissect information or utilize extra mapping after the eICR is received by the jurisdiction.

Cons:

- Certain split reporting specification guides may not be relevant to multiple jurisdictions, which could create a large catalogue of unutilized guides in the RCKMS system.

- Split reporting specifications guides would ultimately create additional mapping needs for jurisdictions that don’t require the split information for their reporting needs (e.g. having to map multiple reportable condition codes to one disease product code in their surveillance system).

Dec 01, 2022 at 8:43 PM Notified 287 people

Kristen Merrell

1. HIV - Would your jurisdiction rather have HIV remain a single condition in RCKMS, or split into 3 conditions for adult, pediatric, and perinatal exposure?

Montana would prefer to have HIV as one condition instead of splitting into three conditions. Since it is one condition in our database.

2. Influenza - Would your jurisdiction rather see a single Influenza condition in RCKMS with various criteria available for age, pregnancy, hospitalization, and mortality; or keep the individual, more specific influenza-related conditions?

In Montana only influenza- associated hospitalizations and mortalities are reported. Montana would prefer to keep Influenzas split and would be interested in adding the Influenza-Associated Mortality condition. We could accommodate if influenza was combined into one condition but would prefer to keep them separate to make it easier to decipher why the eICR was triggered. (If we could see exactly what criteria triggered the eICR and not just the condition code triggered than one condition would be fine.)

3. Prion Diseases - Would your jurisdiction prefer to maintain CJD/vCJD as a separate RS from the other prion diseases, or would you prefer that we modify and rename the existing CJD/vCJD RS so that we move forward with a single RS that includes all prion diseases?

Montana would prefer to modify and rename the existing CJD/vCJD reporting specifications into a single condition for prion diseases. We have prion diseases grouped together in our system so this would make it easier for our reporting and insure inclusion of any potentially rare prion diseases.

4. What are some pros & cons of grouping related conditions in RCKMS (more inclusive approach)?

Pros: Grouping conditions together could allow for states with systems that have diseases grouped as one in their database an easier importing process. Also, a smaller number of conditions needing to update in the future.

Cons: If evaluation of eICRs received appeared to have too many non-relevant eICRs or maybe seems like under reporting than it could require more effort and time for finding the criteria to change. For example, the one condition grouped together probably has more criteria and logic sets than if split apart, which could potentially be more burdensome to review for alterations to the reporting specifications.

5. What are some pros & cons of splitting related conditions in RCKMS (more specific approach)?

Pros: Splitting some of the conditions that could have varying reporting requirements set by states could make it easy for them to simply author the conditions that would meet their requirements. It could make the evaluation process for changing reporting specifications for certain conditions easier

Cons: Some cons of splitting conditions could be that it would require more conditions to be updated and evaluated.

Dec 01, 2022 at 8:49 PM Notified 287 people

Darren Frank, Epidemiologist

Hi Thank you for the poll. Here are Indiana's preferences and answers to your quesitons.

1. HIV

We would prefer to keep HIV as a single condition in RCKMS.

2. Influenza

We would like to have separate specific influenza-related conditions for Indiana. We are especially interested in adding influenza associated death.

3. Prion Disease

No preference

4. What are some pros & cons of grouping related conditions in RCKMS (more inclusive approach)?

Pros: Grouping related conditions would reduce the amount of conditions to keep track of on the authoring system.

Cons: Without the ability to customize the granularity of criteria I fear that many conditions would suffer from reports triggering that do not meet the states reportability criteria.

5. What are some pros & cons of splitting related conditions in RCKMS (more specific approach)?

Pro: Splitting conditions allows for some portion of condition to be reported for example influenza associated mortality. While allowing PHDs to not author conditions that are not reportable.

Cons: Some conditions like HIV, are preferred to be kept general by various states. The specific approach would increase strain on technical teams as there would be more data that would be needed to be mapped to databases.

Dec 02, 2022 at 2:53 PM Notified 286 people

Amy Lai

Thank you for the poll. Here is Arizona's comment on this topic.

1. HIV

Would your jurisdiction rather have HIV remain a single condition in RCKMS, or split into 3 conditions for adult, pediatric, and perinatal exposure?

It depends. If there is an indicator within eCR that has age of Diagnosis, we can see the benefit of splitting the condition. However, we don’t think there is a data element within eCR that can give us an accurate patient’s age at time of diagnosis. Therefore, AZ prefers to have HIV remain a single condition. We use a single condition for HIV within our surveillance system, so even if the condition is broken down into three conditions, they will be mapped to the same condition in our system.

2. Influenza

We would prefer to keep the individual, more specific influenza-related conditions. Rationale are listed below..

Influenza-Associated Hospitalizations- This would be interesting to capture, but being voluntary and not required data would be spotty so we aren't sure how valuable of a metric it would be for AZ with reports being voluntary.
Influenza-associated pediatric mortality:already reportable in AZ, so RCKMS makes sense.
Influenza-like Illness (ILI)- would be interesting to capture, but being voluntary and not required data would be spotty. What would we list as in MEDSIS? Not flu, so no where to store it. We wouldn't want to capture this as nonreportable.
Novel Influenza A Virus Infection: already reportable in AZ, so RCKMS makes sense.
Influenza: Already lab reportable in AZ, so may make sense to add to RCKMS
Influenza-Associated Mortality: This would be interesting to capture, but being voluntary and not required data would be spotty so we aren't sure how valuable of a metric it would be for AZ with reports being voluntary.Also, we already query vital records for these, so not sure it would add much to our surveillance.

3. Prion Disease

Would your jurisdiction prefer to maintain CJD/vCJD as a separate RS from the other prion diseases, or would you prefer that we modify and rename the existing CJD/vCJD RS so that we move forward with a single RS that includes all prion diseases?

AZ would prefer grouping the two since we don’t have them separated in our system.

4. What are some pros & cons of grouping related conditions in RCKMS (more inclusive approach)?

Grouping can make managing the messages and the criteria easier (assuming the same criteria make sense to use). However, it is more tricky to split them if we have them as separate conditions in our system which we would end up having to split the single report into two based on reported information and in order to do so, we need the data to always be present which can be challenging for the sender.

Another use case we can think of is for conditions that are hard to determine the morbidity upfront at the time of patient visit and requires further investigation to know the “Morbidity”. Those conditions would be good candidates for grouping.

5. What are some pros & cons of splitting related conditions in RCKMS (more specific approach)?

If a certain condition has very specific reporting specifications, or different case definitions, splitting it from the single condition would be helpful. For example, adult and child case definitions are different or public health uses different criterias to determine the case, like blood lead adult vs blood lead child. Then it might be worth splitting the conditions.

Dec 02, 2022 at 4:33 PM Notified 286 people

Kanishka, Epidemiologist

HIV:

We think splitting into 3 conditions would probably be the best option. The biggest drawback is probably pediatric and perinatal exposure. However, for pediatric infection the PCR tests would be detect the virus (either quantitative like a viral load or qualitative detecting the presence of the virus). For perinatal exposure, those tests would be not detectable (or possibly reported out as negative).

Influenza:

We would suggest to go with the single influenza condition option (first option). I think it would be nice/more convenient to have all that influenza-related information listed in one spot, rather than having to click back and forth between them if a patient met multiple conditions.

Prion Disease:
We think it is fine to combine prion diseases into a single RS as it is very rare.

What are some pros & cons of grouping related conditions in RCKMS (more inclusive approach)?
Pros: Grouping would reduce the amount of conditions and time to keep track of them on RCKMS.
Cons: Without detailed customization some conditions could suffer from reports triggering that do not meet the states reportability criteria.

What are some pros & cons of splitting related conditions in RCKMS (more specific approach)?
Pro: Splitting conditions allows for granular and specific RS.
Cons: Splitting would create additional mapping needs for jurisdictions that don’t require it for their reporting needs

Dec 02, 2022 at 5:23 PM Notified 287 people

Sue Speers, Epidemiologist

We appreciate the ability to provide feedback. Thank you for the opportunity.

Would your jurisdiction rather have HIV remain a single condition in RCKMS, or split into 3 conditions for adult, pediatric, and perinatal exposure? CT would prefer to keep HIV as it is, one condition.

Would your jurisdiction rather see a single Influenza condition in RCKMS with various criteria available for age, pregnancy, hospitalization, and mortality; or keep the individual, more specific influenza-related conditions? CT would prefer to keep the individual more specific influenza related conditions and would be interested in an all influenza mortality option

Would your jurisdiction prefer to maintain CJD/vCJD as a separate RS from the other prion diseases, or would you prefer that we modify and rename the existing CJD/vCJD RS so that we move forward with a single RS that includes all prion diseases? Prion diseases are not reportable in CT

What are some pros & cons of grouping related conditions in RCKMS (more inclusive approach)? We believe that pro and cons are disease dependent. Grouping diseases allows for the need to author less on the front end but may create the need to filter before uploading (creating more work on the backend).

What are some pros & cons of splitting related conditions in RCKMS (more specific approach)? Pro of splitting related conditions allows the PHA to only author the specific condition/disease that is reportable in their state without the need for additional filters on the backend

Dec 02, 2022 at 6:58 PM Notified 287 people

Shelby Fawaz

Below are Florida DOH's responses. Thank you!

1. HIV

Would your jurisdiction rather have HIV remain a single condition in RCKMS, or split into 3 conditions for adult, pediatric, and perinatal exposure?

Florida would vote to split HIV into Adult HIV, Pediatric HIV and Perinatal Exposures. Thinking of how we’d like to use eCR in the future, splitting HIV would assist us with prioritizing records for review and investigation and make it much simpler for the field staff to view the records. If the records weren’t split, we could use an age filter to separate out the records but then we’d still have to separate perinatal exposures from perinatal HIV – it’s much more straightforward to have the records split from the start.

2. Influenza

Florida would vote to keep the influenza conditions separate, as this would be more helpful for how we consume these data into our surveillance system, and also Florida may have different reporting requirements compared to other states. In Florida only “Influenza A, novel or pandemic strains” and “Influenza-associated pediatric mortality in children <18 years old” cases are reportable.

3. Prion Disease

Florida would prefer to maintain CJD/vCJD as separate from other prion diseases.

4. What are some pros & cons of grouping related conditions in RCKMS (more inclusive approach)?

The biggest con of grouping conditions would be the added difficulty for us to separate these out/map conditions within our surveillance system if they are reported to us using the same code from RCKMS. We have had this issue with a few of the conditions authored in RCKMS currently, for example Hepatitis B/C chronic and acute.

5. What are some pros & cons of splitting related conditions in RCKMS (more specific approach)?

The benefit of having more specific conditions within RCKMS would be the ability to map these conditions to their respective disease codes within our surveillance system effectively.

Dec 02, 2022 at 7:42 PM Notified 287 people

Stephanie Moberg, Epidemiologist

1. HIV

Would your jurisdiction rather have HIV remain a single condition in RCKMS, or split into 3 conditions for adult, pediatric, and perinatal exposure?

NM would prefer HIV, perinatal

2. Influenza

NM would like to keep specific influenza-related conditions. We still need to refine some of the criteria in RCKMS to make the current conditions useful/reliable, but once that it is accomplished, it should cover our needs. Having a single influenza condition would certainly help us get a better understanding of flu burden statewide (or if flu was officially reportable condition), but I’m not sure we have the tools to analyze that data and, if the eCR were to require a medical provider to actually input any data, whether we’d even get useful data after a certain point due to burden.

3. Prion Disease

NM would prefer to maintain CJD/vCJD as separate from other prion diseases

Dec 02, 2022 at 11:03 PM Notified 287 people

Alan May, Hepatitis C Epidemiologist

Thanks for organizing this poll. Arkansas is not all the way onboarded for eCR yet, but at this time, our best guess is:

1. Would your jurisdiction rather have HIV remain a single condition in RCKMS, or split into 3 conditions for adult, pediatric, and perinatal exposure? We would prefer a single condition, as we usually store all HIV reports together. We do collect information about "transmission category" for HIV (as many other jurisdictions probably also do), but as long as the case report is reasonably complete, we should be able to do that even if there is only one specification. However, if the definition is split, it should not be a major issue for us.

2. Would your jurisdiction rather see a single Influenza condition in RCKMS with various criteria available for age, pregnancy, hospitalization, and mortality; or keep the individual, more specific influenza-related conditions? We would prefer multiple different conditions as described in this proposal. Influenza is only sometimes reportable in Arkansas (e.g. if it is novel, or if there is a death or hospitalization), so that would make it easier to filter to only the reports we need. Similar to Montana, Indiana, and Connecticut, it would be helpful for us to have a definition that includes all influenza deaths.

3. Would your jurisdiction prefer to maintain CJD/vCJD as a separate RS from the other prion diseases, or would you prefer that we modify and rename the existing CJD/vCJD RS so that we move forward with a single RS that includes all prion diseases? We can make either of these work.

4. What are some pros & cons of grouping related conditions in RCKMS (more inclusive approach)? / 5. What are some pros & cons of splitting related conditions in RCKMS (more specific approach)? All things being equal, we would prefer more specific definitions most of the time. That will make it easier to route the cases where the Arkansas reporting rule may differ slightly from other jurisdictions, or where we have to follow up differently depending on what definition was met. But we do recognize that will require maintaining more separate definitions in RCKMS.

I think this decision probably should be made one disease at a time, as Wisconsin and Connecticut pointed out. There may not be a single approach that is going to work for all conditions. Thanks, Alan

Dec 02, 2022 at 11:28 PM Notified 287 people

Lynn Stuchlik, eCR Coordinator at CDPHE (CO)

CDPHE (CO) would like to keep conditions separate.

1. HIV

HIV is currently available as a single condition in RCKMS, but could be split into 3 conditions:

HIV infection or AIDS, Adult
HIV infection or AIDS, Pediatric
HIV, Perinatal Exposure

Would your jurisdiction rather have HIV remain a single condition in RCKMS, or split into 3 conditions for adult, pediatric, and perinatal exposure?

CO would like to split out the conditions so that we are able to distinguish between the different types coming in and merge them in the backend through reporting as needed.

2. Influenza
The following influenza-related conditions are currently available in RCKMS:

Influenza-Associated Hospitalizations
Influenza-associated pediatric mortality
Influenza-like Illness (ILI)
Novel Influenza A Virus Infection

The following influenza-related conditions are in discussion to be added to RCKMS:

Influenza (for jurisdictions where all influenza cases are reportable)
Influenza-Associated Mortality (for jurisdictions interested in all influenza deaths)

CO would prefer to keep these influenza conditions separate. We are moving toward only requiring in cases of hospitalization or infant mortality and would like the option to prevent other related cases from coming in.

3. Prion Disease

A reporting specification for Creutzfeldt-Jakob Disease and Variant Creutzfeldt-Jakob Disease is currently available in RCKMS.
This RS is specific to CJD/vCJD and does not include other (even more rare) prion diseases such as Gerstmann-Straussler-Scheinker Syndrome and Fatal Familial Insomnia.

CO would like to maintain these diseases as separate.

Dec 03, 2022 at 12:29 AM Notified 287 people

Denise Ok

Here is the Hawaii State Department of Health's comment. Thank you!

1. HIV

Hawaii would prefer to split out the conditions. Split conditions will alert us quickly for response and save our time in identifying cases.

2. Influenza

Hawaii would prefer to keep the individual, more specific influenza-related conditions. We are interested in Influenza-Associated Mortality.

3. Prion Disease

Hawaii would prefer to group them into "idiopathic", "inherited", and "acquired" groups.

4. What are some pros & cons of grouping related conditions in RCKMS (more inclusive approach)?

Grouped conditions with shared code identifiers makes it inherently more difficult to parse out different approaches within disease surveillance.

5. What are some pros & cons of splitting related conditions in RCKMS (more specific approach)?

Splitting conditions allows us to both generalize via an inclusive query identity as well as drill-down on specific conditional approaches within disease groups.

Dec 03, 2022 at 2:16 AM Notified 288 people

Deb Loniewski

Hello,
Sorry, this is late for Michigan, but we have not authored HIV conditions yet, so the program needed a lot of information before making their decision. Hopefully some input may be used!

1. HIV

We prefer to split out the HIV into 2 separate conditions, Adult and Pediatric, however we will accept the 3rd, perinatal if that is the decided by the majority.

2. Influenza

Influenza is only reportable to Michigan for pediatric Influenza-Associated Mortality cases.

3. Prion Disease

Michigan prefers to Group CJD and vCJD to have a single Prion Disease condition in RCKMS.

4. What are some pros & cons of grouping related conditions in RCKMS (more inclusive approach)?

Grouped conditions with shared code identifiers makes it inherently more difficult to parse out different approaches within disease surveillance.

5. What are some pros & cons of splitting related conditions in RCKMS (more specific approach)?

Michigan prefers the splitting of conditions when we have the individual condition types in our surveillance system. It is more efficient for data analysis and case processing. In the case of pediatric versus adult, it allows a way to expedite the case reporting to the appropriate teams for follow-up.
In the event the condition is not split for our State then this would lessen the benefit of having the condition separated into multiple conditions in RCKMS.

Thanks!
Deb Loniewski
Michigan Department of Health and Human Services, MDHHS

Dec 06, 2022 at 10:16 PM Notified 288 people

Deb Loniewski

One more note from Michigan,
All Novel Influenza Virus Infections are reportable, so we prefer to have a separate condition for authoring in RCKMS.

THX!

Dec 06, 2022 at 10:20 PM Notified 288 people

Shaily Krishan, Program Manager

Thank you for your engagement and feedback on this topic!

Overall, 18 jurisdictions responded & we generally received support for both splitting and grouping each condition, depending on the jurisdictions' reporting needs.

A majority of respondents want to see HIV remain a single condition, Influenza continue to be split into multiple conditions, and Prion disease grouped into a single condition.

The results are shown below & the RCKMS content team will go with the majority vote for each condition (in bold text):

HIV:
Group - 10
Split - 7

Influenza:
Group - 3
Split - 14

Prion disease:
Group - 9
Split - 4

Note: The Reporting Specifications for HIV (updated), Influenza-associated Mortality, and Prion Disease will be available at the next RCKMS Content Release (projected February 2023). Please be on the lookout for the complete list of new conditions for the February 2023 release coming soon!

Dec 08, 2022 at 9:52 PM Notified 291 people