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This page is for organizations and initiatives focused on the data-to-evidence portion of the knowledge ecosystem cycle. The purpose of the documentation below is to support efforts to use data about care delivery and results to generate evidence, meet reporting requirement, and activities. The first set of tables apply broadly to COVID-19 (and other targets), and the second set of tables refer to evidence and guidance specifically related to the Collaborative’s current focus targets; i.e., COVID-19 testing and triage, and anticoagulant use.

Those providing data for these tables should consider, "What do you want those who seek to implement 'living guidance' to know about 'data-to-evidence' strategies, initiatives and tools to make their efforts more successful? Likewise, "What do you want to know about efforts of others working in the knowledge ecosystem to make your data-to-knowledge efforts more successful?"


Notes from 10/16-19/20 email exchange

From JO:

"No question that 'data to evidence' is critical to the Collaborative's knowledge ecosystem enhancement effort.  Sandy asked to be included in the exploration, and Sara and Brian mentioned in the chat too - all copied on this note. Also looping in Jenna, whom you noted has been a partner for you in representing this need throughout the ACTS journey, and Ben Hamlin, who may be very interested in this as well. Including Surbi, Chris and Matt, since the UMN anticoagulation results could be part of an effort to demonstrate better flow through this link.

It would be great to strengthen how we're attending to this link in the chain - especially critical in the COVID-19 era. We could establish a new 'Collaborative Participant Window' devoted to this link in the cycle (i.e., "Apply Results (QI/Create Evidence)"). If we do this, would you be able to shepherd contributions to this page (along with other interested) and work with me to make sure we're connecting the best we're surfacing about this link with the other links we're working on in the Collaborative?"

From BA:

"EBMonFHIR (COKA) works at the “evidence part” of the knowledge ecosystem and FHIR.   “Evidence to Guidance” as you know works with CPGonFHIR, CDC ACG, C19, etc. and the HL7 CDS Work Group

In the other direction (“Data to Evidence”) participants include HL7 Biomedical Research and Regulation (BRR) work group and an HL7 FHIR Accelerator named Vulcan.   We are helping BRR map out FHIR ResearchStudy and FHIR ResearchSubject resources."

From MM:

"Partially echoing Brian, the “data to evidence” part of the cycle includes some aspects of research but also things like public health and quality reporting.

So in addition to groups like HL7 BRR and Vulcan, there’s also Da Vinci (quality reporting), and Making EHR Data More Available for Research and Public Health (MedMorph) (research and public health data exchange) that all fall into the “category” that I think we’ve been leaving out in our ACTS discussions."

From MB:

"Related to DaVinci, should include DEQM- Data Exchange for Quality Measurement.

The "Rosetta Stone"/ Holy Grail would be to use the same Concepts/Terms/Codes as appropriate throughout the entire cycle, NOT just the same Terminology Systems.  And I won't even go down the path of using the same Information Model as both are needed to get truly accurate semantics (OM.  CC-in Victor Lee and Andy Kanter in this regard."


From VL:

Piggybacking onto Matt’s comments, the alignment on semantics is in fact the principal goal of the COVID-19 Interoperability Alliance (https://covid19ia.org). In collaboration with various community stakeholders, we’ve authored more than 600 value sets and have made them freely available from both the Alliance website (no registration required, just download away) and VSAC (registration for a free account is required by NLM). If there are specific inquiries or even requests for value sets, I’d be happy to discuss. It’s our way of giving back to the community and making an impact on the pandemic.


From SL:

And to add further to this conversation, the 'data to evidence' portion is the key to precision medicine that we hope to achieve someday. So Big Data play a huge role here. IBM Watson was/is trying to move in this direction. I believe the oncology-focused Flatiron Health is also a player but would need to confirm that. The ASCO CancerLinQ would certainly be in this space. 

Additionally, we should think about all registries. If we could get all registries using the same standards and terminologies in an interoperable way, we could really move the needle.


From JN:

Also measures & common data elements for research (e.g., PhenX, NIH CDE Repository)… ideally aligning data standards across clinical care, registries, public health surveillance & research (to the extent possible).

Several NIH research efforts (e.g., RADx) are aiming to align research measures/CDEs for COVID 19.


From MM:

While it’s not COVID-19-related, cancer reporting is one of the use cases we’re modeling in MedMorph, and mCODE already provides a head start towards semantic interoperability (it’s not quite there yet, but that’s part of the goal). Bouncing off of Sandy’s comments, there might be something there to explore further.

Indirectly COVID-19 related, cancer was one set of the chronic diseases that saw a dip in timely treatment especially earlier on in the pandemic, so there’s probably still a COVID-19 angle even with cancer… plus cancer is actually a lot of different diseases under that one umbrella. On the semantic interoperability end, we could look at cancer data elements that are also COVID-19 data elements (e.g., cross-disease semantic interoperability). Thinking out loud here, but seems like something we can at least discuss. Every state in the U.S. has a cancer registry with cancer reporting required by law.

There’s definitely plenty of opportunity just with COVID-19 too.

From SS:

Absolutely agree with mobilizing the resources and bringing them on a common platform as suggested by all . I am happy to help out in any way. 




Overarching Description of Data-to-Evidence Community Best Practices, Tools, Resources, Initiatives (see especially 'Apply Results' column at the end of these tables)



Identify (Search/Screen) Primary Studies (See this CoP page)

Synthesize Evidence (including Assessing Quality) (See this CoP page)

Current 

Approach1




Pearls/Tips Learned/Tools


Desired Approach

Needs to Achieve Desired Approach

Check all that apply

__Better source/input materials [Details: ]

__Common format/terminologies for managing/sharing data [Details: ]

__Other [Details:]


Check all that apply

__Better source/input materials [Details: ]

__Common format/terminologies for managing/sharing data [Details: ]

__Consistency of outcomes [Details:]

__Engagement with primary researchers and upstream stakeholders [Details:]

__Engagement with decision makers and other downstream stakeholders [Details:]

__Other [Details:]

Support You Can Provide Other Participants




Produce Guidance (See this CoP page)

Make Guidance Computable (See this CoP page)

Current 

Approach



Pearls/Tips Learned/Tools

Desired Approach

Needs to Achieve Desired Approach

Check all that apply

__Better source/input materials [Details: ]

__Common format/terminologies for managing/sharing data [Details: ]

__Other [Details:]

Check all that apply

__Better source/input materials [Details: ]

__Common format/terminologies for managing/sharing data [Details: ]

__Other [Details:]

Support You Can Provide Other Participants



Implement Guidance (e.g., as CDS, eCQMs) (See this CoP page)

Analyze Results (e.g., care outcomes) (See this CoP page)

Apply Results (e.g., QI, create evidence) (See this CoP page)

Current 

Approach




Pearls/Tips Learned/Tools


Desired Approach


Needs to Achieve Desired Approach


Check all that apply

__Better source/input materials [Details: ]

__Common format/terminologies for managing/sharing data [Details: ]

__Other [Details:] 

Check all that apply

__Better source/input materials [Details: ]

__Common format/terminologies for managing/sharing data [Details: ]

__Other [Details:]

Check all that apply

__Better source/input materials [Details: ]

__Common format/terminologies for managing/sharing data [Details: ]

__Other [Details:]

Support You Can Provide Other Participants


Stakeholders can place comments at the bottom of any Learning Community page. If you need editing access to these Participant Window pages, please contact support@ahrq-acts.org.



Drill Down into Data-to-Evidence Community Best Practices, Tools, Resources, Initiatives For ACTS Collaborative Focus Targets  (see especially 'Apply Results' column at the end of these tables)


COVID-19 Testing/Triage (ED and ambulatory settings)



Identify (Search/Screen) Primary Studies

Synthesize Evidence (including Assessing Quality)

Current 

Approach



Pearls/Tips Learned/Tools

Desired Approach

Needs to Achieve Desired Approach

Check all that apply

__Better source/input materials [Details: ]

__Common format/terminologies for managing/sharing data [Details: ]

__Other [Details:]


Check all that apply

__Better source/input materials [Details: ]

__Common format/terminologies for managing/sharing data [Details: ]

__Consistency of outcomes [Details:]

__Engagement with primary researchers and upstream stakeholders [Details:]

__Engagement with decision makers and other downstream stakeholders [Details:]

__Other [Details:]

Support You Can Provide Other Participants



Produce Guidance

Make Guidance Computable

Current 

Approach



Pearls/Tips Learned/Tools

Desired Approach

Needs to Achieve Desired Approach

Check all that apply

__Better source/input materials [Details: ]

__Common format/terminologies for managing/sharing data [Details: ]

__Other [Details:]

Check all that apply

__Better source/input materials [Details: ]

__Common format/terminologies for managing/sharing data [Details: ]

__Other [Details:]

Support You Can Provide Other Participants



Implement Guidance (e.g., as CDS, eCQMs)

Analyze Results (e.g., care outcomes)

Apply Results (e.g., Quality Improvement, create evidence)

Current 

Approach




Pearls/Tips Learned/Tools


Desired Approach


Needs to Achieve Desired Approach

Check all that apply

__Better source/input materials [Details: ]

__Common format/terminologies for managing/sharing data [Details: ]

__Other [Details:]

Check all that apply

__Better source/input materials [Details: ]

__Common format/terminologies for managing/sharing data [Details: ]

__Other [Details:]

Check all that apply

__Better source/input materials [Details: ]

__Common format/terminologies for managing/sharing data [Details: ]

__Other [Details:]

Support You Can Provide Other Participants



Anticoagulation



Identify (Search/Screen) Primary Studies

Synthesize Evidence (including Assessing Quality)

Current 

Approach



Pearls/Tips Learned/Tools

Desired Approach

Needs to Achieve Desired Approach

Check all that apply

__Better source/input materials [Details: ]

__Common format/terminologies for managing/sharing data [Details: ]

__Other [Details:]


Check all that apply

__Better source/input materials [Details: ]

__Common format/terminologies for managing/sharing data [Details: ]

__Consistency of outcomes [Details:]

__Engagement with primary researchers and upstream stakeholders [Details:]

__Engagement with decision makers and other downstream stakeholders [Details:]

__Other [Details:]

Support You Can Provide Other Participants



Produce Guidance

Make Guidance Computable

Current 

Approach



Pearls/Tips Learned/Tools
Desired Approach

Needs to Achieve Desired Approach

Check all that apply

__Better source/input materials [Details: ]

__Common format/terminologies for managing/sharing data [Details: ]

__Other [Details:]

Check all that apply

__Better source/input materials [Details: ]

__Common format/terminologies for managing/sharing data [Details: ]

__Other [Details:]

Support You Can Provide Other Participants



Implement Guidance (e.g., as CDS, eCQMs)

Analyze Results (e.g., care outcomes)

Apply Results (e.g., Quality Improvement, create evidence)

Current 

Approach




Pearls/Tips Learned/Tools


Desired Approach


Needs to Achieve Desired Approach

Check all that apply

__Better source/input materials [Details: ]

__Common format/terminologies for managing/sharing data [Details: ]

__Other [Details:]

Check all that apply

__Better source/input materials [Details: ]

__Common format/terminologies for managing/sharing data [Details: ]

__Other [Details:]

Check all that apply

__Better source/input materials [Details: ]

__Common format/terminologies for managing/sharing data [Details: ]

__Other [Details:]

Support You Can Provide Other Participants


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