Pieter Van Gorp & Marco Comuzzi 1 Lifelong Personal Health Records in the Cloud CMBS 2012 #CBMS12 #PHR @pvgorp MyPHRMachines

2 CMBS 2012 #CBMS12 #PHR @pvgorp Problem

3 CMBS 2012 #CBMS12 #PHR @pvgorp PHR Solution (1/2) (in general)

4 CMBS 2012 #CBMS12 #PHR @pvgorp PHR Solution (2/2) (in general)

PHR: Definition Personal Health Record (PHR): “a set of computer-based tools that allow people to access and coordinate their lifelong health information and make appropriate parts of it available to those who need it” Patients own their records 5 D. C. Kaelber, A. K. Jha, D. Johnston, B. Middleton, and D. W. Bates. Viewpoint paper: A research agenda for personal health records (PHRs). JAMIA, 15(6):729–736, 2008

PHR <> EHR Electronic Health Record (EHR): Care organization owns all records of its patients 6 Gunter, T.D. and Terry, N.P. 2005 The Emergence of National Electronic Health Record Architectures in the United States and Australia: Models, Costs, and Questions in J Med Internet Res 7(1)

Outline 7 #CBMS12 #PHR @pvgorp

PHR Systems 8 MyPHRMachines (2012) MyPHRMachines (2014)

Commercial Examples of Free-Standing PHR systems Web forms to build a very comprehensive PHR Fine-grained sharing controls Features to delegate management of PHR Microsoft HealthVault Forms to enter your Symptoms Treatments Share/discuss satisfaction level PatientsLikeMe.com Patient still uploads data Share lifelong record to physicians SeeMyRadiology.com 9

(ex1) HealthVault: controlled PHR sharing 10

(ex2) PatientsLikeMe.com 11 Enter your Symptoms Enrich your profile… Compare & Discuss

(ex3) SeeMyRadiology.com 12

Structure of Presentation 13 #CBMS12 #PHR @pvgorp

PHR Research Challenges Top four PHR research opportunities: PHR function evaluation, PHR adoption and attitude analysis, privacy and security solutions, architectural solutions. 14

Structure of Presentation 15 #CBMS12 #PHR @pvgorp

MyPHRmachines Architecture of all* other PHR systems Application Software remains within care organizations PHR web apps “re-invent the wheel” Architecture of MyPHRmachines Application Software is also provided to the Patient within the PHR (virtualization) Application software can be made available by the patient to other caregivers 16

MyPHRmachines: Vision & Reality Vision: personal computer device with all your health data medical software is available no license issues cannot be lost fails over when broken powerful enough for complex computational tasks fits in your pocket securely delegate control privacy compliant also toward service developers Reality: http://is.ieis.tue.nl/staff/pvgorp/myphr/?username=tester2@pietervangorp.com (password: tmp123) 17

Demo Time… 18

Screenshots of the demo (1/2) 19

Screenshots of the demo (2/2) 20

How it Works: remote virtual machines (1/3) 21 VM images Software Catalogue with Access Control

22 How it Works: remote virtual machines (2/3)

23 How it Works: remote virtual machines (3/3)

Conclusion 24 #CBMS12 #PHR @pvgorp Conclusion

25 CMBS 2012 #CBMS12 #PHR @pvgorp PAST

26 PRESENT DICOM PCDSS (Pers. Med.) … #CBMS12 #PHR @pvgorp

27 FUTURE #CBMS12 #PHR @pvgorp

Future & Ongoing Work Research: Business Model Privacy-specific extensions (e.g., Pers. Med. Use case) Record Transformation/Consolidation (as a VM service) Development Mounting PHR fragments to VMs Integration with EHR systems (data push) secure data repositories secure messaging platforms Mainstream PHR systems (e.g., Indivo/X) 28