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

1. PCORnet PPRN
Partner Meeting

2. Welcome!
Rachael Fleurence, Director
CER Methods and Infrastructure Program

3. PCORnet Data Infrastructure and
PPRN Needs
Jeff Brown and Lesley Curtis
Data Standards, Security, and Network
Infrastructure Task Force

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
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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
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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?
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7. What is a distributed research network?
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CDRNs
PPRNs
Guiding principles
Standardized data
Secure portal
Operations Center
with querying
capability

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. What does it mean to query the PCORnet DRN?
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10. 10
PCORnet

11. 11
PCORnet

12. PCORnet Distributed Analysis
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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
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PCORnet Secure Network Portal
1
PCORnet Operations Center
6
2

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
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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. 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
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16. What’s next?
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PCORnet
kick-off!
Share technical
survey results
DSSNI TF
kickoff!
Register on the
PCORnet DRN
Define initial
common data
elements
Install
PopMedNet

17. Thank you!
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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!
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