Chris Carr Director of Informatics, Radiological Society of North America

1. Chris Carr Director of Informatics, Radiological Society of North America Secretary, IHE International Board ccarr@rsna.org www.ihe.net Integrating the Healthcare Enterprise (IHE) An IHE-based Project for Image Sharing through Personal Health Records

2. Background – Imaging Medical imaging the most commonly ordered diagnostic procedure and fasting growing physician service in US health system • Medicare data show annual utilization increases of about 9%, three times the rate of other physician services Value of medical imaging in providing accurate, noninvasive diagnosis is unquestioned Costs of “overutilization” and excessive radiation exposure are growing concerns Inaccessibility of prior studies is responsible for a significant number of duplicate studies

3. Background – Imaging Medical images consistently standardized (DICOM) and the part of the health record most frequently provided to patients in digital form Today most often provided on portable media (CD, DVD) Serious limitations to exchange via physical media: inconvenience and failures for producers and consumers of images The growth of advanced imaging techniques (eg, MRI, CT, PET, Nuclear Cardio) has led to an enormous growth in the amount of imaging data acquired—by volume the largest source of electronic health data

4. Project Overview In Sept. 2009, RSNA was awarded two-year $4.7 million contract by the National Institute of Biomedical Imaging and Bioengineering (NIBIB) • Funding provided under provisions of ARRA Pilot project to create “Internet-Based Network for Patient-Controlled Medical Image Sharing” Network based on IHE XDS-I profile for sharing images and reports Provide for patient control by incorporating access via personal health record (PHR) accounts

5. Project Goals Demonstrate a method for sharing images and reports that improves upon portable media Enable patients to create a medical record with access at their control Create standards-based links to personal health record systems to enable sharing of images and reports Establish the practice and expectation of accessibility of health records by participating patients Enroll a growing number of patients throughout course of project Provide data on the impact of image sharing on care Deliver open source reference implementation of systems developed for project

6. Participating Sites • Year 1: Five major medical centers • Mount Sinai, NYC • Mayo Clinic, Rochester, MN • University of California, San Francisco • University of Chicago • University of Maryland • Year 2: • Each of the five Year 1 sites recruit three additional “satellite” sites • 7 additional sites begin sharing images for clinical trials

7. Overall Plan • Year 1: • Develop systems needed to enable image sharing through PHRs • Establish sharing of images and reports at five initial sites via PHR • Year 2: • Expand patient information sharing via PHR to satellite sites • Begin sharing images for clinical trials at seven additional research site • Recruit growing number of patients throughout course of trial • Gather information on patient usage and impact on radiology operations at participating sites

8. Systems Design • Based on IHE XDS model • Data to be shared images (CT, MR, X-Ray) and diagnostic reports • All data access through PHR accounts • Simplified model for sharing to address policy considerations • “CD over the Wire”

9. CD Over the Wire • Participating sites create (and import) hundreds of imaging CD/DVDs daily • Physical media are time consuming to create • Physical media rely on patient maintenance and delivery to subsequent care providers • In spite of DICOM and IHE, inconsistency in formatting and viewers • Online delivery offers potential to improve incrementally upon current state of practice

10. Steps in Sharing via PHR • Site staff enroll patient and obtain consent • Site staff assemble encounter record (image and reports) and submit for sharing • Patient is provided security key (printout/email) for retrieving record through PHR • Site staff provide patient with instructional material on creating and using PHR account • Patient creates account, logs in, uses security key to retrieve record into PHR • Patient provides subsequent care providers with access to records through PHR

11. Network Components • “Edge” Device at each site to bridge local imaging and information systems with image sharing network • Image “Clearinghouse” to temporarily store images and reports • One or more Web-based PHR providers capable of securely retrieving images and reports from clearinghouse into patient account

12. System Architecture PARTICIPATING SITE CLEARINGHOUSE PHR RIS Images & Reports PHR Edge Device HL7 PACS Temporary Storage Persistent Storage DICOM SITE FIREWALL PHR Viewing by Subsequent Care Provider with Patient Authorization

13. Edge Device • Listens to HL7 messages from RIS, captures completed reports • Enables site personnel to create an encounter record by selecting one or more sets of images and reports • Retrieves image studies from PACS • Creates XDS-based payload including images, reports and manifest • Gets identifying security key from Clearinghouse and sends package

14. Clearinghouse • Provides security key to Edge Devices on request • Receives and stores encounter record (image/report package) for designated period (eg, 30 days) • Responds to queries from designated PHR systems providing security key and sends requested encounter record

15. PHR • Allows creation of secure patient-controlled account • Provides facility for patient to enter security key and retrieves and processes selected encounter record from Clearinghouse • Provides persistent storage for images and reports • Provides Web-based viewer for images and reports • Provides mechanism for secure download of images for viewing in local environment

16. Simplifications of IHE Model • No patient ID management or subject discovery through network • No Patient ID Cross-Reference Manager • Simplified Registry/Repository storing only security tokens and associated encounter records • Information sharing provided exclusively through PHR • Not an HIE model

17. IHE XDS-I HIE Model Health Information Exchange Network Local Clinic Care Site Care Site Imaging Center Registry ‏ Repository Regional Repository Care Site Repository Care Site Community Health Center Regional Hospital

18. IHE XDS-I Data Flow

19. Site Policies Behind Design • Baseline is the most restrictive policy among participants • No inbound connections to clinical systems • No export of unsecured protected health information (PHI) outside site firewall • No exchange of PHI with other care providers without business associate agreement (BAA)

20. Limitations of Project Model • No “universal coverage” • Depends on active patient to initialize sharing • Does not serve patients debilitated by trauma, age, disease • No aggregation of information for quality, outcomes analysis • Limited by capabilities and policies of PHR providers • Business model for PHRs not clear Issuing RFI today for potential PHR partners

21. Potential Benefits of Project • Establish practice of online information sharing • Encourage patient ownership of electronic health records • Build expectation of patient-control within participating sites • Improve upon portable media for convenience and efficiency of information sharing • Show standards-based mechanism and simple infrastructure for sharing of information through PHRs

22. Summary • Medical images are a high-value use case and a relatively easy win for information sharing • Participants believe in the HIE model and the IHE approach to implementing standards for information sharing • Current business and security policies make it impossible to establish a true HIE model in performance of current contract • Information sharing through PHRs is an incremental step toward greater accessibility of health information for care providers

23. Thanks for joining us! Find out more at ihe.net ccarr@rsna.org