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

• 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

• realtime co-management of data
• multi-directional, multi-stakeholder CRUD on all data
• "personal data logistics"

• 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
• 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!