Pieter Van Gorp Lifelong Personal Health Records in the Cloud CMBS 2012 @pvgorp #PHR MyPHRMachines Clinical Informatics Research and Development (CIRD) clinical informatics seminar July 18th, 2012

Outline What is MyPHRMachines? Demo Research Contribution Ongoing collaborations in Boston Discussion 2

3 Personal Health Records?

4 CMBS 2012 #PHR @pvgorp Problem

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

6 CMBS 2012 #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” Patient owns his/her record 7 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 Systems: Vision & Reality 1st manifesto Szolovits (1994), Guardian Angel: Patient-Centered HISs Sensors, CDS, appointment scheduler, semantic integration API, social NW Reality: Indivo, HealthVault, (Google Health) Our Vision Van Gorp, Comuzzi and Kaymak (2011): array of personal computer devices with all your health data powerful enough for complex computational tasks medical software is available as a service privacy compliant “app store” fits in your pocket cannot be lost fails over when broken securely shareable Reality: MyPHRMachines 8

PHR Systems 9 MyPHRMachines (2012)

DISCLAIMERS 1) SUPPLEMENT (plugin) to HealthVault/Indivo 2) No patents pending 10

PHR Research Challenges Top four PHR research opportunities: PHR function evaluation, PHR adoption and attitude analysis, privacy and security solutions, architectural solutions. 11

A novel PHR System Architecture Architecture of all other PHR systems Application Software remains within care organizations PHR web apps “re-invent the wheel” are vulnerable to platform evolution (server APIs, UIs, …) Architecture of MyPHRmachines Application Software is also provided to the Patient, in the cloud. 12

Demo Time… 13 #PHR @pvgorp

Screenshots of the demo (1/4) 14 #PHR @pvgorp

Screenshots of the demo (2/4) 15 #PHR @pvgorp

Screenshots of the demo (3/4)

Screenshots of the demo (4/4) 17

Live Demo DICOM Demo & Personalized Medicine Demo 1 18

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Exploring Further, citing Van Gorp, P. and Comuzzi, M.  MyPHRMachines: Lifelong Personal Health Records in the Cloud, 25th IEEE International Symposium on Computer-Based Medical Systems (CBMS 2012); Universita Campus Bio-Medico di Roma, Rome, Italy, on 20-22 June 2012. 20

MyPHRMachines, revisited: Beyond software industry efficiencies Top four PHR research opportunities: PHR function evaluation, PHR adoption and attitude analysis, privacy and security solutions, architectural solutions. 21

A novel PHR System Architecture (revisited) Architecture of all other PHR systems Conventional Service Oriented Architectures Remote Procedure Calls “If you want my service, give me your data” Architecture of MyPHRmachines “If you want to service, give us your software” Trusted Broker (platform) Patient-owned Virtual Machine sessions Stateless Connectionless 22 Inversion of Control

Conventional Service Oriented Architectures (SOAs) “If you want my service, give me your data” 23

Recap: Conventional SOA Image Source: http://www.codeproject.com/Articles/6399/Securing-web-services-using-SOAP-extensions 24 Secure RPC mechanisms well understood What happens with your data at the remote server?

But isn’t HIPAA protecting us? Well, let’s check HealthVault (based on Indivo Architecture) Prestigious example: Mayo Clinic’s HealthVault plugin Privacy Statement (contract, terms of use) 25

Mayo Clinic: Privacy Statement How your Personal Information is stored The Service temporarily stores or "caches" Personal Information as necessary to provide you the Service. The Service does not permanently store any of your Personal Information. All of the Personal Information you enter, edit or view in the Service is held only temporarily by the Service. Information you enter or edit in the Service is added to your Microsoft HealthVault account once you hit "Save." 26 Acceptable for a respected service provider such as the Mayo Clinic But what if their sysadmin screws up? Also: how to enable worldwide competition on disruptive innovation in HC?

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28 Can the average citizen be expected to understand this? Replace by “Wonder service XYZ”

Proposal Trust your PHR data once to a secure, HIPAA-governed platform Platform architecture should provide hard guarantees concerning privacy Persuade the smart/skeptical ones Protect the ignorant ones 29

30 MyPHRMachines Privacy & Security: patient perspective Stateless VM sessions, without general internet access IN OUT

How it Works: remote virtual machines 31

How it Works: remote virtual machines 32

How it Works: remote virtual machines 33

How it Works: remote virtual machines 34

Inversion of Control: illstrated “If you want to service, give us your software” 35

How it Works: remote virtual machines 36 Getting new software in VM images

Conclusion 37 #PHR @pvgorp Conclusion

38 CMBS 2012 PAST

39 PRESENT Imaging SW Personalized Medicine … Radically new Architecture: Inversion of Control based on Virtual Machine Technology

Exploring Further, citing Pieter Van Gorp, Marco Comuzzi, André Fialho and Uzay Kaymak.  Addressing Health Information Privacy with a novel Cloud-Based PHR System Architecture 40

41 FUTURE Medical SW services Standardization, Consolidation and Anonymization SW services Clinical Research Repositories, leading to better Medical services

42 Part 2: Boston Collaborations

Generic Interview Questions Q1: Should patients get access to all their medical data? Q2: Should PHRs contain data that is invisible to the patient? Q3: To what extent should patient data first undergo a filtering / translation step? (to layman’s terms) Q4: Please assess the relevance of the VM based architecture Privacy: how relevant? Complex SW: how relevant? Q5: Business Model? Q6: Publication, role of interviews/validation 43

Concrete Collaboration Options Focus: CDS/MyPHRMachines, focus on architecture Option 1: Deploy legacy CDSS in MyPHRMachines Option 2: Use MyPHRMachines as CDSC audit platform Option 3: PersMed elaboration (SMC validation) Option 4: Use Indivo/SmartPlatforms as the backbone 44 #PHR @pvgorp

Summary of Evaluation 45 Pragmatic Planning #PHR @pvgorp

Personalized Medicine in the Cloud Building a secure AppStore for Monogenetic Diseases and More 46

Example: Leukemia Treatment (1/3) 47

Example: Leukemia Treatment (2/3) Reflection: (ex) Research Fellows, raise your hand “we do this for the patient” Brother gives bone-marrow transplant Highly Motivational Colleague But the story continues… Wartman: “Seven months after the transplant, feeling much stronger, he went to a major cancer meeting and sat in on a session on his type of leukemia. The speaker, a renowned researcher, reported that only 4 or 5 percent of those who relapsed survived.” Relapse (NY Times, Start: 1m40s, Stop: 4m10) Team Lead: “Why not throw everything we have at seeing if we can find a rogue gene spurring Dr. Wartman’s cancer?” 48

Analysis of RNA 49

Example: Leukemia Treatment (3/3) Online discussions of article: ethical debate about money spending, access to SotA MyPHRMachines “business model”: provide an appstore for genomic diagnostic services Insurance can cover some services, Anyone has the right to pay 10$ out of his/her pocket, without compromizing confidentiality Vision: global market (beyond US, EU) Competitive (patient ratings, price competition, …) Need hard guarantees w.r.t. privacy MyPHRMachines’s VM-based architecture 50

Choice of extra demonstrator: service for Monogenic Diseases result from modifications in a single gene occurring in all cells of the body >10,000 of human diseases are known to be monogenic Canada: monogenic diseases may account for upto 40% of the work of hospital based pediatric practice (Scriver, 1995) Why access services? “Early treatment of thalessaemia has proved to be very effective in improving the quality of life of patients. Currently, genetic testing and counseling, and prenatal diagnosis play an increasingly important role in informing individual as well as professional decisions around the prevention, management and treatment of this disease” 51

Concrete Demonstrator Use of PolyPhen2 for BRCA1 PolyPhen2 has been hard to use so far, still open to Alternative service examples Alternative platforms 52

Other emerging stories http://boards.medscape.com/forums?128@29.5ohHaP4Sf2R@.2a336241!comment=1 Can Genomic Medicine Be Clinically Useful Yet? Husband of woman with “Peritoneal cancer” “Cancer elicits a primal fear that can provoke fantasy and baseless speculation.” Useful insights: … suggests that her cancer may respond to targeted drug therapies like those that have been effective for many breast cancer patients – tamoxifen, for example …  eliminates the notion that treatments aimed at HER2 mutations could be beneficial. Again: leverage your sequenced genome, leverage software services as they mature 53

Commercial SotA, 2012 <<function>> 54 Future: out-sourcing parts of pipeline. Future: patient will get/leverage result of sequencing.

Commercial SotA, 2012 <<achitecture>> 55 Why trust this cloud? Also: too monolithic?

Conclusion Triggered by own frustrations concerning inefficiencies of care system (duplicate scans), simple solution for DICOM content (old stuff). Leading to advanced demo for the future of medicine “App store” platform for diagnostic services App developers do not have to worry about HIPAA App users have real peace of mind EU/NSF funded demo platform, need “Apple” partner to commercially develop the MyPHRMachines app store and data repository? Or start-up? 56

Question & Discussion Time Thank you! Acknowledgements (so far): Marco Comuzzi, André Fialho, Uzay Kaymak, Ruslana Tsurikova, Blackford Middleton, Jonathan Einbinder, Tonya Hongsermeier, Harley Ramelson, Howard S. Goldberg, Roberto Rocha, Carol Broverman, Sandy Aronson, Anthony Liekens 57 #PHR @pvgorp