Stream: social
Topic: Research oriented collaboration community?
Jessica Malenfant (Apr 26 2018 at 17:54):
Hi all -
I work in population health informatics and research currently leading a data quality metrics project that will be based on data extracted from EHRs for secondary uses (e.g. surveillance, research) and also very new to FHIR.
We've started exploring the use of FHIR for data fingerprinting and generating descriptive statistics about data sources. I was told that the FHIR MeasureResource, MeasureReport, and Evaluate-Measure operation are good places to start to structure and transfer these data quality data. (as an aside, I've started to map our DQ tests and results in Excel, but I think that's the wrong approach to take to get started).
I'm reaching out to see if there is a research-oriented collaboration community. If so, we'd love to participate and figure out how we can use FHIR for secondary uses of e-health data like research and public health surveillance, specifically in a distributed health data network.
Thanks in advance!
Grahame Grieve (Apr 26 2018 at 20:50):
@Wayne Kubick
Wayne Kubick (Apr 26 2018 at 21:28):
@Jessica Malenfant Hi, Jessica. I have a small stream under #biopharma but it's been mostly limited to clinical trials to date. I have been in conversations with others about uses such as regulatory review, safety surveillance and other research-focussed secondary uses, so suggest you sign up for that stream. Also worth connecting with @Dan Gottlieb regarding Bulk Data and @Josh Mandel regarding All of Us.
Lloyd McKenzie (Apr 27 2018 at 00:13):
In addition to #biopharma, there are a couple of work groups you may want to monitor. The http://www.hl7.org/Special/committees/rcrim/index.cfm deals with the research area in general. The Clinical Quality Information work group deals with the resources and operation you've identified. You might also be interested in the DAF Research project. As well, if there's interest, we could certainly look at establishing a Research stream.
Lilian Minne (Apr 30 2018 at 07:53):
Hi Jessica,
That's sounds like a great idea. In the Netherlands we have the Medical Intelligence initiative, which is a collaboration between Dutch academic hospitals and Furore to build a generic architecture and share knowledge on clinical data collection for research and quality measurement. The first hospitals now started to investigate the possibilities of FHIR.
One of them is using Questionnaire and QuestionnaireResponse to automatically extract data from their EHR and send it to the auditing party. Another one has built a Vonk Facade server as a layer above their custom non-fhir data warehouse. The Vonk Facade server provides the mappings to FHIR resources, which are sent to an application researchers use for data collection of their patients. If you are interested, there's a tutorial online on how to build a Vonk Facade Server: http://docs.simplifier.net/vonk/facade/facadestart.html
Good luck!
Lilian
Jessica Malenfant (May 15 2018 at 20:14):
Hi - thanks all!
@Wayne Kubick thanks - I do know Dan actually and I'll follow-up with him on the bulk data work. I'm also following the #biopharma stream now as well, thanks.
@Lloyd McKenzie thanks - I'll look into that HL7 workgroup. If we wanted a research stream here, how would you suggest we solicit interest? It would be great to connect with others doing this work.
@Lilian Minne - I'll take a look at that tutorial and see if it's something we might use.
We're just starting to write out the FHIR JSON structure in Notepad as a starting point for 3 data quality metrics we're interested in
Lloyd McKenzie (May 15 2018 at 20:15):
Let's start this way: Who would join a research stream if we created one? Give a thumbs-up to this post if you would :)
Simone Heckmann (May 16 2018 at 07:04):
@Gustav Vella
Gustav Vella (Aug 05 2018 at 17:41):
@Lloyd McKenzie - I think there is a community here - some of us follow biopharma - some topics are covered there but we have a different focus. Especially those of us who work on study sites. I could count 40-50 friends & acquaintances in clinical research also dealing with FHIR for the purpose. Having a clinical research Stream would greatly help having those discussions here and not elsewhere.
Lloyd McKenzie (Aug 05 2018 at 23:52):
Very well. #research now exists :)
Last updated: Apr 12 2022 at 19:14 UTC
