PCORnet PPRN
Partner Meeting
Welcome!
Rachael Fleurence, Director
CER Methods and Infrastructure Program
PCORnet Data Infrastructure and
PPRN Needs
Jeff Brown and Lesley Curtis
Data Standards, Security, and Network
Infrastructu...
PCORnet Distributed Research Network Aims
Create a research-ready PCORnet Distributed Research
Network (DRN)
 11 Clinical...
Data Standards, Security & Network
Infrastructure Task Force
Key responsibilities
Create a distributed research network ca...
Topics for today
What is a distributed research network?
 What does it mean to be part of a distributed research
network?...
What is a distributed research network?
7
CDRNs
PPRNs
Guiding principles
Standardized data
Secure portal
Operations Center...
PPRN
Registry
PPRN
Patient
Portal
Dataset
PPRN
Disease
registry
Disease
registry
PPRN
Patient
Portal
Data
Warehouse
PPRN
D...
What does it mean to query the PCORnet DRN?
9
10
PCORnet
11
PCORnet
PCORnet Distributed Analysis
12
CDRN 1
Review &
run query
Review &
run results
Enroll
Demographics
Utilization
Etc.
3 4
PP...
CDRN and PPRNs maintain physical and
operational control over their data
Distributed approach allows partners to maintain ...
A few things to keep in mind when selecting
an approach to data capture
Whatever you choose should support your needs and
...
How will we standardize data across the PPRNs?
Learn about the kinds of data that PPRNs are bringing to
PCORnet
Begin with...
What’s next?
16
PCORnet
kick-off!
Share technical
survey results
DSSNI TF
kickoff!
Register on the
PCORnet DRN
Define init...
Thank you!
17
Adjourn and Picking Up Tomorrow
Tomorrow’s webinar will begin at 8am
Separate registration is required for those listening...
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Patient-Powered Research Network Workshop

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Slide presentation from Day One of the Patient-Powered Research Network Workshop. This workshop began on January 22, 2014 at the Brookings Institute.

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Patient-Powered Research Network Workshop

  1. 1. PCORnet PPRN Partner Meeting
  2. 2. Welcome! Rachael Fleurence, Director CER Methods and Infrastructure Program
  3. 3. PCORnet Data Infrastructure and PPRN Needs Jeff Brown and Lesley Curtis Data Standards, Security, and Network Infrastructure Task Force
  4. 4. PCORnet Distributed Research Network Aims Create a research-ready PCORnet Distributed Research Network (DRN)  11 Clinical Data Research Networks  18 Patient-Powered Research Networks  Other interested participants Leverage evolving resources and capabilities of HHS existing multipurpose clinically embedded networks, electronic data, and clinical research initiatives 4
  5. 5. Data Standards, Security & Network Infrastructure Task Force Key responsibilities Create a distributed research network capable of supporting rapid, efficient, and reproducible multi-network research Ensure that CDRNs/PPRNs maintain physical and operational control over their data Use distributed analysis methods that minimize the need to share patient level data 5
  6. 6. Topics for today What is a distributed research network?  What does it mean to be part of a distributed research network?  What does it mean to “query” a distributed research network? How will we standardize data across PPRNs? 6
  7. 7. What is a distributed research network? 7 CDRNs PPRNs Guiding principles Standardized data Secure portal Operations Center with querying capability
  8. 8. PPRN Registry PPRN Patient Portal Dataset PPRN Disease registry Disease registry PPRN Patient Portal Data Warehouse PPRN Dataset (EHR) EHR PPRNs bring different kinds of data to PCORnet
  9. 9. What does it mean to query the PCORnet DRN? 9
  10. 10. 10 PCORnet
  11. 11. 11 PCORnet
  12. 12. PCORnet Distributed Analysis 12 CDRN 1 Review & run query Review & run results Enroll Demographics Utilization Etc. 3 4 PPRN 1 Review & run query Review & run results Enroll Demographics Utilization Etc. 3 4 1- User creates and submits query (a computer program) 2- Data partners retrieve query 3- Data partners review and run query against their local data 4- Data partners review results 5- Data partners return results via secure network 6 Results are aggregated 5 PCORnet Secure Network Portal 1 PCORnet Operations Center 6 2
  13. 13. CDRN and PPRNs maintain physical and operational control over their data Distributed approach allows partners to maintain control of their data and all uses Partners have option to review requests before execution and review results before release No need to change local workflow related to release of information All activities secure and audited 13
  14. 14. A few things to keep in mind when selecting an approach to data capture Whatever you choose should support your needs and produce a database that can be analyzed using non- proprietary software. Consider open source platforms Learn from each other!
  15. 15. How will we standardize data across the PPRNs? Learn about the kinds of data that PPRNs are bringing to PCORnet Begin with data that are common to many PPRNs  Demographics  Vital signs  Diagnoses/conditions  Others? Develop standardized definitions of common data elements  Use existing standards whenever possible 15
  16. 16. What’s next? 16 PCORnet kick-off! Share technical survey results DSSNI TF kickoff! Register on the PCORnet DRN Define initial common data elements Install PopMedNet
  17. 17. Thank you! 17
  18. 18. Adjourn and Picking Up Tomorrow Tomorrow’s webinar will begin at 8am Separate registration is required for those listening in online, please do so on pcori.org in the Meetings & Events section. You will receive a separate link. See you tomorrow! 18

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