The NIH Distributed Research Network Slides 09-13-13.pdfThe NIH Distributed Research Network New...
Transcript of The NIH Distributed Research Network Slides 09-13-13.pdfThe NIH Distributed Research Network New...
![Page 1: The NIH Distributed Research Network Slides 09-13-13.pdfThe NIH Distributed Research Network New Functionality and Future Potential Jeffrey Brown, PhD for the NIH Health Care Systems](https://reader036.fdocuments.us/reader036/viewer/2022071009/5fc71239c4ddf70f6533c36c/html5/thumbnails/1.jpg)
TheNIHDistributedResearchNetworkNewFunctionalityandFuturePotential
Jeffrey Brown, PhD for the NIH Health Care Systems Collaboratory EHR Core
Harvard Pilgrim Health Care Institute and Harvard Medical School
September 13, 2013
Millions of people. Strong collaborations. Privacy first.
![Page 2: The NIH Distributed Research Network Slides 09-13-13.pdfThe NIH Distributed Research Network New Functionality and Future Potential Jeffrey Brown, PhD for the NIH Health Care Systems](https://reader036.fdocuments.us/reader036/viewer/2022071009/5fc71239c4ddf70f6533c36c/html5/thumbnails/2.jpg)
Thegoal
Facilitate multi‐site research collaborations between investigators and data partners by creating secure networking capabilities and analysis tools for electronic health data
2
![Page 3: The NIH Distributed Research Network Slides 09-13-13.pdfThe NIH Distributed Research Network New Functionality and Future Potential Jeffrey Brown, PhD for the NIH Health Care Systems](https://reader036.fdocuments.us/reader036/viewer/2022071009/5fc71239c4ddf70f6533c36c/html5/thumbnails/3.jpg)
VisionfortheNetwork:Manytypesoforganizationsanddata
Health Plan 1
Health Plan 2
Research Dataset 2
NIH Distributed Research Network Secure Portal
Research Dataset 1
CTSA 2
3
Registry 2
CTSA 1 Registry 1
![Page 4: The NIH Distributed Research Network Slides 09-13-13.pdfThe NIH Distributed Research Network New Functionality and Future Potential Jeffrey Brown, PhD for the NIH Health Care Systems](https://reader036.fdocuments.us/reader036/viewer/2022071009/5fc71239c4ddf70f6533c36c/html5/thumbnails/4.jpg)
Multipledatasources
4
Health Plan 2
Health Plan 1
Health Plan 5
Health Plan 4
Health Plan 7 Hospital 1
Health Plan 3
Health Plan 6
Health Plan 8
Hospital 3Health Plan 9
Hospital 2
Hospital 4
Hospital 6
Hospital 5
Outpatient clinic 1
Outpatient clinic 3
Outpatient clinic 2
Outpatient clinic 4
Outpatient clinic 6
Outpatient clinic 5
![Page 5: The NIH Distributed Research Network Slides 09-13-13.pdfThe NIH Distributed Research Network New Functionality and Future Potential Jeffrey Brown, PhD for the NIH Health Care Systems](https://reader036.fdocuments.us/reader036/viewer/2022071009/5fc71239c4ddf70f6533c36c/html5/thumbnails/5.jpg)
Adistributednetworklinksdatasources
5
FDA Mini‐Sentinel
Health Plan 2
Health Plan 1
Health Plan 5
Health Plan 4
Health Plan 7 Hospital 1
Health Plan 3
Health Plan 6
Health Plan 8
Hospital 3Health Plan 9
Hospital 2
Hospital 4
Hospital 6
Hospital 5
Outpatient clinic 1
Outpatient clinic 3
Outpatient clinic 2
Outpatient clinic 4
Outpatient clinic 6
Outpatient clinic 5
![Page 6: The NIH Distributed Research Network Slides 09-13-13.pdfThe NIH Distributed Research Network New Functionality and Future Potential Jeffrey Brown, PhD for the NIH Health Care Systems](https://reader036.fdocuments.us/reader036/viewer/2022071009/5fc71239c4ddf70f6533c36c/html5/thumbnails/6.jpg)
Multiplenetworksshareinfrastructure
6
FDA Mini‐Sentinel
Health Plan 2
Health Plan 1
Health Plan 5
Health Plan 4
Health Plan 7 Hospital 1
Health Plan 3
Health Plan 6
Health Plan 8
Hospital 3Health Plan 9
Hospital 2
Hospital 4
Hospital 6
Hospital 5
Outpatient clinic 1
Outpatient clinic 3
Outpatient clinic 2
Outpatient clinic 4
Outpatient clinic 6
Outpatient clinic 5
NIH Distributed Research Network
• Each organization can participate in multiple networks• Each network controls its governance and coordination• Networks share infrastructure, data curation, analytics, lessons, security, software development
![Page 7: The NIH Distributed Research Network Slides 09-13-13.pdfThe NIH Distributed Research Network New Functionality and Future Potential Jeffrey Brown, PhD for the NIH Health Care Systems](https://reader036.fdocuments.us/reader036/viewer/2022071009/5fc71239c4ddf70f6533c36c/html5/thumbnails/7.jpg)
Not thegoal
• We will not create a new stand‐alone network with its own research agenda or content experts
• Investigators will nothave access to data without data partners’ active engagement
7
![Page 8: The NIH Distributed Research Network Slides 09-13-13.pdfThe NIH Distributed Research Network New Functionality and Future Potential Jeffrey Brown, PhD for the NIH Health Care Systems](https://reader036.fdocuments.us/reader036/viewer/2022071009/5fc71239c4ddf70f6533c36c/html5/thumbnails/8.jpg)
Year1progress
• Created and tested a secure network with distributed querying capabilities
• Identified initial data partners• Established draft governance document• Laid groundwork for querying i2b2 data repositories
8
![Page 9: The NIH Distributed Research Network Slides 09-13-13.pdfThe NIH Distributed Research Network New Functionality and Future Potential Jeffrey Brown, PhD for the NIH Health Care Systems](https://reader036.fdocuments.us/reader036/viewer/2022071009/5fc71239c4ddf70f6533c36c/html5/thumbnails/9.jpg)
NIH Distributed Research Network Coordinating Center
Mini‐Sentinel A
Medical Practice 1
Mini‐Sentinel B
Medical Practice 2
Hospital 1
CTSA 1
Hospital 1
Research dataset 1
CTSA 2 Registry 2
Registry 1
Network Management
Research Support
Query Support
Query Tool Development
Knowledge Database
Software Development
Project Management
Data Models & Standards
Consultation
Health System Expertise
NIH DRN Secure PortalKnowledge Management System
Cross project lessons learned, query tracking, meta‐data capture, search functions, etc
AdministrationQuery ToolsSAS, SQL,
menu‐drivenModular Programs
Summary Tables
Feasibility
PROJECTS
LIRE Analytic ToolsOther projects
Query Interface Reporting Tools
Security & Access ControlFile & Query Repository
User Administration Workflow Management
Research dataset 2 9
![Page 10: The NIH Distributed Research Network Slides 09-13-13.pdfThe NIH Distributed Research Network New Functionality and Future Potential Jeffrey Brown, PhD for the NIH Health Care Systems](https://reader036.fdocuments.us/reader036/viewer/2022071009/5fc71239c4ddf70f6533c36c/html5/thumbnails/10.jpg)
Currentpartners
• Aetna• Group Health Research Institute• Harvard Pilgrim Health Care• HealthCore• Humana• Optum
Approximately 40 million current members
10
![Page 11: The NIH Distributed Research Network Slides 09-13-13.pdfThe NIH Distributed Research Network New Functionality and Future Potential Jeffrey Brown, PhD for the NIH Health Care Systems](https://reader036.fdocuments.us/reader036/viewer/2022071009/5fc71239c4ddf70f6533c36c/html5/thumbnails/11.jpg)
Currentdataandfunctionality
• Routinely updated and quality‐checked data • Over 90 million covered lives
• Complete data capture for defined intervals• Inpatient and outpatient encounters, diagnoses, procedures
• Outpatient pharmacy dispensings• Demographics
• Mini‐Sentinel common data model• Functionality includes
• Simple queries of pre‐compiled frequencies• Standardized queries of person‐level data
11
![Page 12: The NIH Distributed Research Network Slides 09-13-13.pdfThe NIH Distributed Research Network New Functionality and Future Potential Jeffrey Brown, PhD for the NIH Health Care Systems](https://reader036.fdocuments.us/reader036/viewer/2022071009/5fc71239c4ddf70f6533c36c/html5/thumbnails/12.jpg)
Distributeddata/distributedanalysis
• Data partners keep and analyze their own data• Standardize the data using a common data model
• Distribute code to partners for local execution• Provide results, not data, to requestor• All activities audited and secure
12
![Page 13: The NIH Distributed Research Network Slides 09-13-13.pdfThe NIH Distributed Research Network New Functionality and Future Potential Jeffrey Brown, PhD for the NIH Health Care Systems](https://reader036.fdocuments.us/reader036/viewer/2022071009/5fc71239c4ddf70f6533c36c/html5/thumbnails/13.jpg)
Usecases
Assess disease burden/outcomesPragmatic clinical trial designSingle study private network• Pragmatic clinical trial follow up• Reuse of research data
13
![Page 14: The NIH Distributed Research Network Slides 09-13-13.pdfThe NIH Distributed Research Network New Functionality and Future Potential Jeffrey Brown, PhD for the NIH Health Care Systems](https://reader036.fdocuments.us/reader036/viewer/2022071009/5fc71239c4ddf70f6533c36c/html5/thumbnails/14.jpg)
Usecases
Assess disease burden/outcomesPragmatic clinical trial designSingle study private network• Pragmatic clinical trial follow up• Reuse of research data
14
![Page 15: The NIH Distributed Research Network Slides 09-13-13.pdfThe NIH Distributed Research Network New Functionality and Future Potential Jeffrey Brown, PhD for the NIH Health Care Systems](https://reader036.fdocuments.us/reader036/viewer/2022071009/5fc71239c4ddf70f6533c36c/html5/thumbnails/15.jpg)
NIHquestion
What is the rate of fractures among new bisphosphonate users with a prior diagnosis of osteoporosis?
15
![Page 16: The NIH Distributed Research Network Slides 09-13-13.pdfThe NIH Distributed Research Network New Functionality and Future Potential Jeffrey Brown, PhD for the NIH Health Care Systems](https://reader036.fdocuments.us/reader036/viewer/2022071009/5fc71239c4ddf70f6533c36c/html5/thumbnails/16.jpg)
Queryofpre‐compiledcounts
16
• Drugs• Alendronate sodium• Pamidronate disodium• Zoledronic acid, Zometa• Zoledronic acid, Reclast
• ICD9‐CM codes for fracture• 805xx (vertebral w/o spinal cord injury)• 806xx (vertebral with spinal cord injury)• 820xx (neck of femur)
![Page 17: The NIH Distributed Research Network Slides 09-13-13.pdfThe NIH Distributed Research Network New Functionality and Future Potential Jeffrey Brown, PhD for the NIH Health Care Systems](https://reader036.fdocuments.us/reader036/viewer/2022071009/5fc71239c4ddf70f6533c36c/html5/thumbnails/17.jpg)
17
* Incident users based on a 90‐day wash‐out period
0
20,000
40,000
60,000
80,000
100,000
120,000
2008 2009 2010 2011 20120‐21 22‐44 45‐64 65+
Alendronate usersbyyearandagegroup*
~90,000 in 2012
![Page 18: The NIH Distributed Research Network Slides 09-13-13.pdfThe NIH Distributed Research Network New Functionality and Future Potential Jeffrey Brown, PhD for the NIH Health Care Systems](https://reader036.fdocuments.us/reader036/viewer/2022071009/5fc71239c4ddf70f6533c36c/html5/thumbnails/18.jpg)
0
200
400
600
800
1,000
1,200
1,400
1,600
1,800
2008 2009 2010 2011 2012
0‐21 22‐44 45‐64 65+
Pamidronate disodiumusersbyyearandagegroup*
18
*Prevalent users based on HCPCS J2430
~1,400 in 2012
![Page 19: The NIH Distributed Research Network Slides 09-13-13.pdfThe NIH Distributed Research Network New Functionality and Future Potential Jeffrey Brown, PhD for the NIH Health Care Systems](https://reader036.fdocuments.us/reader036/viewer/2022071009/5fc71239c4ddf70f6533c36c/html5/thumbnails/19.jpg)
Zolendronic acid(Reclast)usersbyyearandagegroup*
19
0
2,000
4,000
6,000
8,000
10,000
12,000
14,000
16,000
18,000
2008 2009 2010 2011 2012
0‐21 22‐44 45‐64 65+
*Prevalent users based on HCPCS J3488
~20,000 in 2012
![Page 20: The NIH Distributed Research Network Slides 09-13-13.pdfThe NIH Distributed Research Network New Functionality and Future Potential Jeffrey Brown, PhD for the NIH Health Care Systems](https://reader036.fdocuments.us/reader036/viewer/2022071009/5fc71239c4ddf70f6533c36c/html5/thumbnails/20.jpg)
Zolendronic acid(Zometa)usersbyyearandagegroup*
20
0
1,000
2,000
3,000
4,000
5,000
6,000
7,000
8,000
9,000
10,000
2008 2009 2010 2011 2012
0‐21 22‐44 45‐64 65+
*Prevalent users based on HCPCS J3487
~11,000 in 2012
![Page 21: The NIH Distributed Research Network Slides 09-13-13.pdfThe NIH Distributed Research Network New Functionality and Future Potential Jeffrey Brown, PhD for the NIH Health Care Systems](https://reader036.fdocuments.us/reader036/viewer/2022071009/5fc71239c4ddf70f6533c36c/html5/thumbnails/21.jpg)
Hipfracture*
21
0
5,000
10,000
15,000
20,000
25,000
30,000
35,000
2008 2009 2010 2011 2012
0‐21 22‐44 45‐64 65+
*Prevalence
~30,000 in 2012
![Page 22: The NIH Distributed Research Network Slides 09-13-13.pdfThe NIH Distributed Research Network New Functionality and Future Potential Jeffrey Brown, PhD for the NIH Health Care Systems](https://reader036.fdocuments.us/reader036/viewer/2022071009/5fc71239c4ddf70f6533c36c/html5/thumbnails/22.jpg)
Vertebralfracturew/oinjurytospinalcord*
22
0
2,000
4,000
6,000
8,000
10,000
12,000
14,000
16,000
2008 2009 2010 2011 2012
0‐21 22‐44 45‐64 65+
*Prevalence
~22,000 in 2012
![Page 23: The NIH Distributed Research Network Slides 09-13-13.pdfThe NIH Distributed Research Network New Functionality and Future Potential Jeffrey Brown, PhD for the NIH Health Care Systems](https://reader036.fdocuments.us/reader036/viewer/2022071009/5fc71239c4ddf70f6533c36c/html5/thumbnails/23.jpg)
Vertebralfracturewithinjurytospinalcord*
23
0
200
400
600
800
1,000
1,200
1,400
1,600
1,800
2008 2009 2010 2011 2012
0‐21 22‐44 45‐64 65+
*Prevalence
~2,900 in 2012
![Page 24: The NIH Distributed Research Network Slides 09-13-13.pdfThe NIH Distributed Research Network New Functionality and Future Potential Jeffrey Brown, PhD for the NIH Health Care Systems](https://reader036.fdocuments.us/reader036/viewer/2022071009/5fc71239c4ddf70f6533c36c/html5/thumbnails/24.jpg)
Standardizedqueryofpatient‐leveldata
Validated SAS programs with flexible inputs for exposure, outcome, and other settings
24
![Page 25: The NIH Distributed Research Network Slides 09-13-13.pdfThe NIH Distributed Research Network New Functionality and Future Potential Jeffrey Brown, PhD for the NIH Health Care Systems](https://reader036.fdocuments.us/reader036/viewer/2022071009/5fc71239c4ddf70f6533c36c/html5/thumbnails/25.jpg)
Keyspecificationsofstandardizedquery
• Define cohort• Define incident user• Define incident events• Query period• Age range• Continuous enrollment gap • Coverage (medical and drug) requirements
25
![Page 26: The NIH Distributed Research Network Slides 09-13-13.pdfThe NIH Distributed Research Network New Functionality and Future Potential Jeffrey Brown, PhD for the NIH Health Care Systems](https://reader036.fdocuments.us/reader036/viewer/2022071009/5fc71239c4ddf70f6533c36c/html5/thumbnails/26.jpg)
Specificationsforbisphosphonate request
• Cohort: Members 40+ years old with an osteoporosis diagnosis and no fractures in the 365 days before new use
• Incident exposure: New users of ANY of the 4 bisphosphonates based on a 365 day wash‐out period
• At risk period: 365 days after incident exposure • Incident outcome: Observed fracture (hip, vertebral, non‐hip/non‐vertebral) in any care setting among new users
• Query period: January 1, 2008 ‐ December 31, 2012• Age groups: 40‐54, 55‐64, 65+ years• Continuous enrollment gap: 45 days
26
![Page 27: The NIH Distributed Research Network Slides 09-13-13.pdfThe NIH Distributed Research Network New Functionality and Future Potential Jeffrey Brown, PhD for the NIH Health Care Systems](https://reader036.fdocuments.us/reader036/viewer/2022071009/5fc71239c4ddf70f6533c36c/html5/thumbnails/27.jpg)
27
Incidentusers
131,056
365
36,593
2,9190
20,000
40,000
60,000
80,000
100,000
120,000
140,000
![Page 28: The NIH Distributed Research Network Slides 09-13-13.pdfThe NIH Distributed Research Network New Functionality and Future Potential Jeffrey Brown, PhD for the NIH Health Care Systems](https://reader036.fdocuments.us/reader036/viewer/2022071009/5fc71239c4ddf70f6533c36c/html5/thumbnails/28.jpg)
28
Fracturesamongincidentusers
1,004
8345
26
1,792
26
655
76
5,648
31
1,989
159
0
1,000
2,000
3,000
4,000
5,000
6,000 Hip Fracture
Vertebral Fracture
Other Fracture
![Page 29: The NIH Distributed Research Network Slides 09-13-13.pdfThe NIH Distributed Research Network New Functionality and Future Potential Jeffrey Brown, PhD for the NIH Health Care Systems](https://reader036.fdocuments.us/reader036/viewer/2022071009/5fc71239c4ddf70f6533c36c/html5/thumbnails/29.jpg)
29
Fracturerateamongincidentusers(per100,000daysatrisk)*
2.5
7.6
3.1 3.04.4
24.6
5.8
8.9
13.9
29.3
17.7 18.6
0
5
10
15
20
25
30
35
Rate per 100,000
days a
t risk
Hip Fracture
Vertebral Fracture
Other Fracture
*Unadjusted
![Page 30: The NIH Distributed Research Network Slides 09-13-13.pdfThe NIH Distributed Research Network New Functionality and Future Potential Jeffrey Brown, PhD for the NIH Health Care Systems](https://reader036.fdocuments.us/reader036/viewer/2022071009/5fc71239c4ddf70f6533c36c/html5/thumbnails/30.jpg)
Caveats
• Data intended as an example of network capability• Standard limitations of electronic health data
• Use of diagnosis codes to identify osteoporosis and fractures• Codes not validated• Treatment indication not available• Privately insured population with stable enrollment
• Bisphosphonate usage is complex• Different routes of administration• Different indications• Different patterns of use
• Rates not adjusted
30
![Page 31: The NIH Distributed Research Network Slides 09-13-13.pdfThe NIH Distributed Research Network New Functionality and Future Potential Jeffrey Brown, PhD for the NIH Health Care Systems](https://reader036.fdocuments.us/reader036/viewer/2022071009/5fc71239c4ddf70f6533c36c/html5/thumbnails/31.jpg)
Clinicaltrialsandcomplexobservationalstudies
• Standardized programs inform development of full study protocols
• NIH DRN can support any analysis• NIH DRN facilitates creation and use of pooled analytic datasets
31
![Page 32: The NIH Distributed Research Network Slides 09-13-13.pdfThe NIH Distributed Research Network New Functionality and Future Potential Jeffrey Brown, PhD for the NIH Health Care Systems](https://reader036.fdocuments.us/reader036/viewer/2022071009/5fc71239c4ddf70f6533c36c/html5/thumbnails/32.jpg)
Usecases
Assess disease burden/outcomesPragmatic clinical trial designSingle study private network• Pragmatic clinical trial follow up• Reuse of research data
32
![Page 33: The NIH Distributed Research Network Slides 09-13-13.pdfThe NIH Distributed Research Network New Functionality and Future Potential Jeffrey Brown, PhD for the NIH Health Care Systems](https://reader036.fdocuments.us/reader036/viewer/2022071009/5fc71239c4ddf70f6533c36c/html5/thumbnails/33.jpg)
TheNIHCollaboratory’s LIREproject
• Creating a network among the LIRE sites and its coordinating center• U Washington (Coordinating center)• Group Health Cooperative• Kaiser Permanente of Northern Cal.• Henry Ford Health System• Mayo Clinic
• Coordinating center can distribute programs to sites securely
• Sites can return results securely
33
![Page 34: The NIH Distributed Research Network Slides 09-13-13.pdfThe NIH Distributed Research Network New Functionality and Future Potential Jeffrey Brown, PhD for the NIH Health Care Systems](https://reader036.fdocuments.us/reader036/viewer/2022071009/5fc71239c4ddf70f6533c36c/html5/thumbnails/34.jpg)
Nextsteps
• Add most Kaiser Permanente and HMO Research Network plans
• Develop new querying and networking functionality
• Potential to expand to other data models• i2b2 networks• ESP networks• CTSAs• Registries• Others
34
![Page 35: The NIH Distributed Research Network Slides 09-13-13.pdfThe NIH Distributed Research Network New Functionality and Future Potential Jeffrey Brown, PhD for the NIH Health Care Systems](https://reader036.fdocuments.us/reader036/viewer/2022071009/5fc71239c4ddf70f6533c36c/html5/thumbnails/35.jpg)
TheDRNisreadyforNIHtouse
• Assess disease burden/outcomes• Pragmatic clinical trial design• Single study private network• Pragmatic clinical trial follow up• Reuse of research data
35
![Page 36: The NIH Distributed Research Network Slides 09-13-13.pdfThe NIH Distributed Research Network New Functionality and Future Potential Jeffrey Brown, PhD for the NIH Health Care Systems](https://reader036.fdocuments.us/reader036/viewer/2022071009/5fc71239c4ddf70f6533c36c/html5/thumbnails/36.jpg)
ThankYou
For more information• nihcollaboratory.org/Pages/distributed‐research‐network.aspx• PopMedNet.org• [email protected]• [email protected]
Prior Grand RoundsJune 28, 2013https://www.nihcollaboratory.org/Pages/Grand‐Rounds‐06‐28‐13.aspx
March 15, 2013https://www.nihcollaboratory.org/Pages/Grand‐Rounds‐03‐15‐13.aspx
36