Patient Generated Health Data (PGHD) Working Group

SCYou · June 25, 2018, 10:42am

Dear colleagues,

I would like to propose to start Patient Generated Health Data (PGHD) Working Group.
The goal of this WG would be developing ETL conventions, integration process with clinical data, and analytic process for PGHD, which is generated through Smart Phone/App/Wearable devices.

I’ve released the sample for PGHD, which was generated by QS app of iPhone (sample_data)
The primitive ETL convention for this data is released, too (PGHD_ETL_convention)

Please join if you’re interested in this topic.
@yipaulkim @Wonchul

Wonchul · June 25, 2018, 7:54am

Great work Seungchan! Let’s make some progress!

Rijnbeek · June 25, 2018, 8:31am

Hi Chan,

Interesting. Within our upcoming European project EHDEN there is some work planned in this direction. Also in Europe the Radar project https://www.imi.europa.eu/projects-results/project-factsheets/radar-cns has a focus on collecting data from wearables and they are looking into OMOP-CDM to host it.

For now count me in, but i may have to delegate it to another person once our project is actually started (probably October).

Peter

Gowtham_Rao · June 25, 2018, 10:35am

@scyou

This is very interesting. I would like to join the work group.

dave16884 · June 25, 2018, 1:11pm

Hello Chan,
As one of the point noted is integration with Clinical data, is there an interest/direction from working group to focus on bridging(integrating) OMOP CDM with CDISC SDTM model or simply rationalizing the clinical data to be housed into OMOP CDM?

jon_duke · June 25, 2018, 1:52pm

@SCYou Please count me in as well. We are doing a couple projects related to mobile health data capture that are based on some prior models and would like to sync up with the OMOP CDM.

Thanks!

Jon

SCYou · June 25, 2018, 2:35pm

@dave16884
I’m not familiar with CDISC SDTM model, but this thread might be helpful for you.

Incorporating of NEST data into Common Data Model Harmonization project

The goal of this project is to enable querying any of the 4 CDMs (Sentinel, PCORnet, OMOP and i2b2/ACT) leveraging an intermediary/über model and generate HL7 FHIR or CDISC standards (SDTM) as the output. This is a FDA-led initiative in collaboration with 3 Institutes at NIH as well as HHS/ONC and is one of the projects within the portfolio of the HHS/Assistant Secretary for Planning and Evaluation (ASPE) Patient-Centered Outcomes Research Trust Fund (PCORTF) program:https://aspe.hhs.gov/os-pcortf-funded-projectsBRIDG is a Domain Analysis Model (DAM) developed by FDA, NCI and is an ISO, HL7 and CDISC standard. BRIDG is implemented by a few biopharmaceutical companies, academia, FDA and NCI as the underlying model for Metadata Registry (MDR), rare disease registries, by a large CRO as the basis for a central canonical data model (CDM) to increase semantic consistency and quality across a diverse portfolio of products and services. For more information about BRIDG, it would be best to visit HL7’s Web site:http://www.hl7.org/implement/standards/product_brief.cfm?product_id=71

igor · June 25, 2018, 3:15pm

Great idea! @SCYou I would like to join this WG.
There are a few mobile open-source software frameworks that may be useful for this project.

Sensing Kit (iOS and Android) — designed for collecting mobile multi-sensor data for research: https://www.sensingkit.org
Apple ResearchKit and CareKit frameworks — for collecting and sharing mobile health /sensor data: https://www.apple.com/researchkit

dave16884 · June 25, 2018, 7:29pm

@SCYou, thank you!

cukarthik · June 25, 2018, 9:34pm

Count me in. Thanks for organizing @SCYou

SCYou · June 25, 2018, 11:09pm

Thank you for the participation, @Wonchul, @Gowtham_Rao, @igor, @cukarthik

@Rijnbeek, I am so happy to hear that EHDEN project has some plan for this and Radar project also considers OMOP-CDM! It would be great if we can integrate data from EHR, claim, registry and smart Phone/Wearable device within OMOP-CDM!

@jon_duke, I cannot tell you how much I was thrilled after taking a look into ‘open mHealth’ project. This is truly awesome!
I reviewed the data schema of open mHealth. I don’t think it would be hard to build interoperable strategy between OMOP-CDM and open mHealth, if we can match target variables and ETL conventions (And I found that most of these of works has been done already! ). Please help me for this!

Sylvia_Cho · June 26, 2018, 1:20am

Hi Seung Chan, I would like to join too. Thanks! @SCYou

yipaulkim · June 26, 2018, 1:35am

Seungchan, thanks for making this project go forward! Definitely interested in joining this project. I can contribute on the nutrition data. Hope to meet you all, soon.

DoyeopKim · June 26, 2018, 1:41am

Please count me in, Chan! Interesting!

shawndolley · June 29, 2018, 2:01am

Count me in please. Also interested in the reality that the location of a data point will not be a clinic but may be a lat/long or remote location. Might tie in with whatever progress the GIS working group has made.

Jaehyeong_Cho · June 29, 2018, 2:50am

As a GIS-related activity, I am developing AEGIS, a tool for disease mapping and disease clustering.
I would like to work with you.
sourcecode : https://github.com/ohdsi/aegis
demonstration video : https://www.youtube.com/watch?v=QQUCtaZSKsU&t=5s

Aelan · June 29, 2018, 7:19am

Please count me, I want to be in. Thank you

rimma · June 29, 2018, 10:14pm

I’m also interested. Thank you for leading the effort.

piyush · June 30, 2018, 6:24am

This is a great idea.Will be happy to participate.

Seongwon · June 30, 2018, 6:25am

Please count me in. Thank you for the Great WG.