The RSNA Image Share Network: Initial 12 Month Results from the UCSF Pilot Site

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  • 1. Anand S. Patel MD*, Wyatt M. Tellis PhD, Mary Torosyan,David E. Avrin MD PhD, and Ronald L. Arenson, MDUCSF Department of Radiology and Biomedical ImagingLaboratory for Radiological Informatics*Correspondence: [email protected]

2. Introduction Medicare expenditure on imaging has nearlydoubled from $6.5B in the year 2000 to $11.7B in2009. At least 10-20% of these costs are due toduplicate exams, frequently due to inadequateaccess to prior exams when transferring patientsbetween institutions. In response the RSNA, in partnership with theNIBIB, launched the Image Share Network in2009. 3. Introduction The Image Share Network is a secure cloud-based electronic personal health record (ePHR)where patients directly control, view, share, andmanage their imaging exams. The RSNA has partnered with 5 pilot sites in theUSA to evaluate the Image Share Network: University of California, San Francisco (UCSF) Mount Sinai Medical Center Mayo Clinic (Rochester, MN) University of Chicago Medical Center University of Maryland Medical Center 4. Introduction GOAL: to improve efficiency, safety, reducerepeat exams, and empower patients with directcontrol of their images and reports via a secureHIPAA compliant internet cloud-based ePHR. As 1 of 5 national pilot sites, we present ourexperience at UCSF with patient enrollment,adoption, and patient/physician satisfaction. 5. Network Design Overview The Image Share network has a hub and spokedesign with a central clearinghouse throughwhich all data are transferred. Clearinghouse is hosted in a HIPAA-compliant,distributed data center with physical accesscontrols. Having a distributed data center providesbusiness continuity by allowing the clearinghouseto continue operating in the event of a failure atone or more of the data center sites. 6. Network Design Overview 7. Network Security Communication with the clearinghouse takesplace over the internet and is secured using TLS1.0 encryption. All nodes are authenticatedthrough the exchange of TLS certificates. Additional security is provided by a firewall withan access control list that permits onlyauthorized IP addresses to connect. Once data are at rest within the clearinghousethey are encrypted and automatically deletedafter thirty days to minimize the chance of datatheft. 8. Network Technical Details To remain vendor agnostic, the network utilizes the IHEXDS-I.b standard for data exchange. 2 vendors currently provide PHR accounts to patientsparticipating in the network Dell (InsiteOne) lifeIMAGE Each site is interfaced to the clearinghouse via anedge server which acts as an XDS documentsource. HL7 and DICOM are used to retrieve reports andimages from the sites RIS and PACS respectively. 9. Network Technical Details Since the focus of XDS-I.b is the exchange of imagingdata across affiliated enterprises, modifications wererequired for use in a consumer-oriented environment. A unique, single use security token is used to identifysubmission sets within the network. To retrieve content from the network, an ePHR mustbe able to reconstruct the token hash, the patientsdate of birth and a password known only to thepatient. By using this approach the network is able to abideby the XDS-I.b standard while providing an increasedlevel of security by minimizing the exposure of PHI. 10. Methods With IRB approval, Network enrollment began in Aug2011 with patients coming to the departments filmlibrary to obtain a CD of their exams. During the first 10 months of the enrollment period(Aug 2011 May 2012), our site enrolled patients asthey contacted the film library for a copy of theirimages on a CD, either in person or over the phone. Patients were educated about the system with astandard informational script communicated by thefilm library as well as formal brochures. 11. Methods Starting in Aug 2012, patients were also provided abrief survey (2 pages for patient, 1 page forphysician) to be completed after use of the system. Incentive $20 gift cards are provided to those patients who mail back the survey. Surveys gauge patients and physicians on: Perceived benefits/utility of patient-controlled ePHRs Importance of health record privacy Baseline computer, internet, and social media usage Satisfaction using the Image Share system (ease ofuse, etc) Satisfaction with the Image Share systems security Whether difficulty with access to CD or Image Sharesystem led to repeat imaging 12. Methods Preliminary follow-up survey questions will begrouped and scored with mean response valuesbased on the following scales: 1 most satisfied, 2 satisfied, 3 neutral, 4 unsatisfied,5 very unsatisfied A score of 1 (daily) 4 (never) is used to assesspatient and physician baseline computer/internetusage 13. Preliminary Results During this initial period (Aug 2011 May 2012) a total ofonly 90 patients (avg of 9 patients/mo), were enrolled. When asked about the low enrollment rates, film librarystaff indicated that low enrollment patients were in ahurry, and not willing to spend time to go through theeducational and consent process. Starting in June 2012, the patient recruitment processwas redesigned to enroll patients while they waited fortheir scans. A recruitment coordinator was hired and dedicated tothe task. 14. Overview of Modified Patient Recruitment ProcessPatients checks in atRadiology reception areaIf patient is not interested Research coordinator in the program, then introduces the RSNApatient awaits his or her Image Share NetworkscanIf patient wishes to enroll, research Patients access theircoordinator goes through theimages/reports, andeducational process prior to consentrequest past and futurestudies with the capabilityto send the studies to anyOnce reports have been finalized, research coordinatordoctors, family, andsends requested images to the clearinghouse, emailing friends, simply with a clickthe patients with simple instructions for accessof a button 15. Results After starting the new process with a studycoordinator, (3 months, JunAug 2012), 357patients were enrolled. Monthly average of 119 patients Increase of 1222% over the previous 10 month avg. 4 of the 5 pilot sites are currently enrollingpatients Total of 1383 patients and 5807 exams. 447 patients enrolled at UCSF for a total of 2288exams. 16. Results Enrollment Overview Significant enrollment rate increase in May 2012 after hiring of a study coordinator. 17. Results Patient Survey N = 66 total surveys returned as of Nov 1, 2012 Mean age 44 yrs (range 15 days to 87 years). Parents/legal guardians comprised 15% of enrolleesFrequency of generalFrequency of internet use for socialcomputer usenetworking or online purchasing 5% 6% 12% Daily Weekly Monthly 55%27% Never95% 18. Results Patient Survey Perceived benefits/utility of patient-controlled ePHRs. 95% felt this was very important or important Average satisfaction score 1.5 +/- 0.7 (1 most 5 leastsatisfied) 4% 11% Very satisfied or satisfiedNeutralUnsatisfied or very85% unsatisfied 2% stated they had repeat imaging because theirphysician had difficulty accessing it 19. Results Patient Survey QsStrongly agree In general I am particularly / agree 16%concerned aboutmaintaining the privacy ofNeutralmy health records. (1 strongly22%agree 5 strongly disagree)62%Stronglydisagree / Avg score 2.3 +/- 1.3 disagree2% I was comfortable with the Strongly agreeprivacy and security of how 11%/ agreemy medical images were Neutraltransferred to my doctor orconsultant. (1 strongly agree 5 Stronglystrongly disagree) disagree / 87% disagree Avg score 1.6 +/- 0.8 20. Results Patient Comments I love it! Easyhelpful The system works really well. pleased by the speed and grateful not to have to bring the image This is really neat. Ive always been curious about the images of my own organs. I loved having the option to review my daughters scan with my husband who could not be at our appointment in SF as we live a couple hours away This was a great tool! I really appreciate the opportunity to take all the time I wanted to read the report and look at the images on my own. 21. Results Patient Comments had difficulty registering takes forever to download Felt process to access images online was not welldefined. Need more detailed instructions on creatingaccount and URL to use. Also, no instructions on whatviewer to use for downloaded images. Took multipleattempts to download file A link would be easier rather than having to highlightthe address and open a new search It was easy for me to access the images however Ihad a hard time accessing the report online. 22. Results Physician Survey N = 34 total surveys returned Average satisfaction score 1.8 +/- 1.3 (1 most 5least satisfied) 21%Very satisfied or satisfied 79%Neutral 8% stated difficulty accessing CD exams led torepeat imaging study 12% stated difficulty accessing Image ShareNetwork led to repeat imaging study 23. Results Physician Survey Qs6% It was critically important thatStronglyI saw the medical image(s) inagree /a short period of time. (1agreestrongly agree 5 strongly disagree)Neutral N = 33, avg score 1.2 +/- 0.694%11% I am comfortable with the Stronglyprivacy and security of howagree /this patients images were sentagreeto me (1 strongly agree 5 stronglyNeutraldisagree)89% N = 27, avg score 1.4 +/- 0.7 24. Results Physician Comments Dr. is at UCSF, so not applicable I think this is great 25. Discussion - Enrollment The lengthy conversation required by theenrollment process proved to be an impediment forenrolling patients when they contacted the filmlibrary to request a CD copy of their images. The modification to include a study coordinatorhelped increase numbers to their highest monthlytotal to date. When patients were a captive audience in thewaiting room they were far more willing to learnabout the network. Once they understood the process and its benefits,the majority of patients were enthusiastic to enroll. 26. Discussion Patient