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February 10, 2021 - Note new time: 7am Pacific, 4pm CET - FHIR and OCA (with some talk about CCI& VCI)
- Guests: Burak Serdar (Cloud Privacy Labs) and John Walker (Linux Foundation Public Health/Covid Credentials Initiative)
- Recording
Topics discussed:
- Layman's history of and intro to FHIR, SMART on FHIR, and LH7 protocols
- Description of the fundamental technical problem: getting secure, trustworthy medical records out of an EHR system, via FHIR, into a maximally portable VC that's just as trustworthy (while not the system of record for that patient)
- Two approaches prototyped by the same task force at ToIP:
- VCI: FHIR --> LD --> OCA --> VC format of choice (depicted in minutes)
- Burak's more end-to-end solution, allowing trust authorities to specify the conversion from FHIR to VC Schemata of their design via OCA
- Useful Links:
- Relevant ToIP task forces and WGs: Semantic Domain and FHIR Focus Group, etc
- Other references: Kantara BIT, FHIR, commercial tooling vendors EPIC
Minutes
John's CCI/LFPH prototype:
Burak's prototypes for extending OCA to specify FHIR extraction:
- John Walker
- JSON --> JSON-LD --> OCA
- Burak Serdar
- OCA originally conceived as a data CAPTURE mechanism, but I have been involved for a while applying it to privacy use cases
- John's overview of FHIR
- protocol for HL7 (4th iteration of it)
- JSON/JSON Schema-based
- EPIC and Cerner (sp?) are actually more installed in the wild; FHIR still a minority pipe-separated messaging structure
- EHR and Health Info Exchanges use it as best-practice messaging protocol
- SMART on FHIR (boston group and Josh Mandell)- OAuth2 + JSON interface and transport for FHIR
- Our work starts from the assumption that personal health info is accessible via SMART on FHIR
- extracting and exchanging data in
- As with any open community, there's tons of development happening here; one strategy that we have decided on is to leverage validation and data structure definitions, and not reinvent any of this or create new opacity
- VCI
- proposed architecture SMART on FHIR endpoint with FHIR endpoint
- Data Mechanics
- OCA consumes the data and applies overlays and hashes and locks it to be tamperproof
- Burak's overview of [OCA work] and FHIR work at ToIP
- see also Privacy and Risk Task Force
- Overlay architecture structures FLAT data, tho-- but FHIR is very graphed, and "circularly linked"
- Complex mapping of OCA to FHIR, that I've been working on, reshapes this
- This enables transformations and overlays onto FHIR messages
- I've also worked on an OCA projection protoype
- John - LD versus JWT - We're working on FHRI --> LD --> JWTs
- Q and A
- Programmer could convert to and from LD the programmer could do on the server side? Does OCA enable client-side ZKP?
- 2 use cases:
- EHR --> LD (apply your own schemata, apply ZKP) --> credentials (you'd need an agent before it goes to a wallet); there's value in making a generalized approach for transparently and accurately get health records into an LD format and out of "FHIRland" - tamperproofed
- ??
- Burak:
- OCA can be presentation layer on extracted FHIR data
- But there's another use case where OCA can help translate server-to-server
- John: I might download my own health records and put them in a POD, or a PDS-- how do I get my health records into my own controlled storage;
- John: Once you pull data out of EHR, it's read-only (that's the authoritative system of record)-- we just want to give people control over their own copy of that
- what about the deltas? That's further down the roadmap
- Burak: Complementary approach: extending OCA to "Projection" - more "end to end", allows governing authorities to define not just the LD Schema for issuance of creds but also the FHIR conversation end to end
- Schema work - Ontology happening (early days; Mattr leading it?)
- Programmer could convert to and from LD the programmer could do on the server side? Does OCA enable client-side ZKP?
- Stephan - FHIR has no idea of doctor's DID and patient's DID
- Stephan: Josh's VCI is poking in that direction: ISO unification of business processes could hold EHR and hospitals to best-practices of switching their ID records to SSI envelopes and identities and tooling...
- Stephan: Vaccination might be too shiny of an object to go after-- if this isn't done by June, will it go anywhere? What about other use-cases? What about health proofs for life insurance? Do you have other use-cases in mind for self-managed health proofs?
- John: We're not exploring them very actively, but we're open to them... (follow-up session!)
- Contacts: bserdar at computer dot org and johnw dot cci at lfph dot io
- Recording
- Overview of the problem space (smart contracts and trust ecosystems)
- B2B: DSCSA (Spherity!); Allied Clinicial Access (?), Federated Learning Coordination (OpenMined?)
- B2C/E: Vaccination Proofs; Ecosystem-Consumer; Clinician Credentialling; eligibility/proof of coverage
- B2G: Covid19 reporting
- What's missing?
- Auth (whence siop?); lightweight API in a sound JS library would accelerate B2B exploration;
- Q&A: Tom Jones: patient matching as a blocker left off this list; Foster bill; CA blockchain alliance; Kantara work & Jim is also involved with a Medicaid group
Meetings
- Recording 2 December - Jim St. Clair (Lumedic), Philipp Page (Human Colossus), and Paul Knowles (Human Colossus, ToIP) on Trust Frameworks and Semantic Frameworks for medical data
- Recording 18 November - Matthias de Bièvre (MyData, aNG) & Dominik Diemel (Comuny.de) on A New Governance and the regulatory landscape around human-centric medical data in Europe
- Recording 4 November 2020 - Iain Henderson (JLinc, Mydata) on the MyData Commons project and the MyData Operators whitepaper and group
Minutes
- Self introduction:
- Consultant for the Scottish govt - advise startups and facilitate business thinking
- JLinc - Business side
- Very active in MyData -
- IIW
- Intro - Data grabs & Surveillance Capitalism - Most but not all
- Confidential data - there are business niches where people DON'T want as much data as possible!
- MyData Commons
- Blog post - Covid as trial by fire for our data ecosystem - we need global citizenship management process, but we don't have the infra for that
- Thesis early on: We need a commons, won't have it soon, but maybe in time for Covid-20
- April-may-june - MyData team in a Covid Hackathon - Personal data store for each individual - used JLinc for SSI and a SalesForce instance (had both on hand)
- Lessons from multiple hackathons
- Massive data problem- how can public health authorities get data about the asymptomatic, the healthy, and the mildly symptomatic? How can you get people to donate helpful data at scale?
- Symptom-tracking apps (i.e. DataYogi.me,
- Dummy data+SalesForce —> population-level analytics
- Integration of wallets and credentials (Digital Wallet JLinc integration) - just a prototype, not taken to market
- MyData alignment/interop
- MyData - working on shared Schema for Operators group - a dictionary that can be consumed as LD, schema.org, OCA
- MyData - working on shared Schema for Operators group - a dictionary that can be consumed as LD, schema.org, OCA
- Last 6 months have taught me that
- 3 separate clients all coming to : current clients - 1 health, 2 in less sensitive areas
- leave data on device
- get ML models on depersonalized/anonymized
- openMined - analyze data without it leaving the subject's device
- "Notice & Consent doesn't scale" —John Wunderlich (JLinc, IIW)
- realtime co-management of data
- multi-directional, multi-stakeholder CRUD on all data
- "personal data logistics"
- 3 separate clients all coming to : current clients - 1 health, 2 in less sensitive areas
- Q and A
- Bernard: Data quality in Covid Commons?
- Iain: Medics designed the system (HL7/FHIR)
- Iain: Self-Managed data tends to have lower incentive problems - individual managing own data and only-once-ing incentivizes honesty
- Bob: How does patient control their data sharing?
- Iain: SISA (written to ledger/immutable store!) —> contract law as enforcement rather than technical control of data
- Iain: JLinc's early work a chain of confidentially
- Bob: Accord project and CommonAccord? Attempting to take common legal language and standardize on it, make it more machine-readable (IEEE WG on machine-readable contracts as well)
- Iain: Individual can come to the info-sharing counterparty as a peer ;
- data quality and compliance are shot in status quo
- FAANG only people making money in current system
- Juan: PDS?
- Iain: Covid is driving home the problem of access to and control of each patient's healthcare records; UK example: high-level summary records are owned by NHS and shared automatically to all pharmacies; My contention is that the core record should be available to patient, AT LEAST through their covid app and build a bridge between their individual records and make better data available to public health records
- In statute, the NHS record is mine
- Children's "blue folders" (maternity records) and "red books" (birth - 5 records) are digital and shared; when they were in paper, it was under mother's control, but in being digitized, shared data
- MyData "DIDs for kids" didn't go very far, too scary to medical industry interlocutors
- Iain: Covid is driving home the problem of access to and control of each patient's healthcare records; UK example: high-level summary records are owned by NHS and shared automatically to all pharmacies; My contention is that the core record should be available to patient, AT LEAST through their covid app and build a bridge between their individual records and make better data available to public health records
- Bernard: I want to understand role of ML in here
- This example was from self-asserted diet study— OpenMined was involved to help diet data be studied
- Bob: 4% of US medications are misdirected!
- Bernard: Data quality in Covid Commons?
- Recording 21 October ) 21 October 2020 - Joost Flach & Mark van der Waal (Triall.io, NL) & Maarten Boender (Sphereon, NL) on decentralized clinical trials
- Recording 7 October - Georg Jürgens (Spherity GmbH) and Robert Celeste (Center for Supply Chain Studies, USA) on VC use-cases in B2B pharmaceutical ecosystems, including Spherity's Authorized Trading Partner trial with SAP and Novartis.
Minutes
- Attendance/ Introductions
- Najib Rehman (??)
- working with a data integrator to support swiss pharma clients on CTs; DLT to speed things up a bit
- Willy (??)
- Leah Houston
- Bernard
- Catherine
- Najib Rehman (??)
- Robert's presentation
- scale: billions of transactions in a 3-hour overnight crunch period
- trial generating valuable material and guidance for industry governance processes
- interaction of technical, operations, and compliance/governance groups
- API and Schemata —> starting point for standardization
- "This is an industry that runs on standards"
- GS1 for txn info and ids,
- Everyone obvi wants to look with the W3C standards
- all the examples in the spec are very consumer-based; bias and mental model
- all the examples in the spec are very consumer-based; bias and mental model
- "This is an industry that runs on standards"
- "Challenges"
- Challenge #1: Scale
- Standards and misfit b/w W3C as-is today and these use-cases
- Challenge #2: Retention req (6 year record-keeping obligation) —> binding VCs and VPs need to be archival/auditable for 6 years!
- VP ephemerality (in VC spec)
- Lesson#1 Identifier ←→ Company name binding needs to be durable/archival
- Challenge #3: How does Company B know that A was handling credentials properly and according to industry and/or regulatory rules, if they just get a log or a recipt?
- Logging of credential exchanges? reusing credentials falsely, replay attacks, etc?
- Out of scope for now, but we're starting to look at the possibility of a third-party compliance auditor or guarantor? Do they attach additional VCs?
- security risks
- drug cartel made 25 shell corps to hide infiltration in a drug supply chain
- mitigations of legal identity issues
- drug cartels have a big R&D budgets for impersonation, counterfeiting, etc— way more tech savvy than many supply chain actors such as smalltown pharmacies!
- drug cartel made 25 shell corps to hide infiltration in a drug supply chain
- Q and A
- Najid: FMD (I used to work for Pfizer so I know the DCSCA and serialization!); what are your thoughts on B2B2P and P identity?
- Orphan disease area? Teaching hospital ... Therapies and vectors?
- Volume and complex stakeholders...
- Standards around labeling (tagging blood in loop); 200K-1.3m$ therapies! the liabilities (and stakes) are massive there
- How do we get everybody on board? Some people are incentivized for intransparency
- Bob: One of the pilots in the FDA program was a very expensive personalized drug: the roundtrip; temp control in transit; temperature indicator behind a bar code, so that bar code changed
- Georg: Novartis is looking into this for Kamriah; validated (manual) process for now
