Kick Off Meeting 06 August, 2020 Thursday 1100 ET

1. Welcome Notes (Jim StClair)
   1. LF Anti-Trust notice etc
   2. expecting liaison from other organizations working in the same space
2. Objectives (see slides)
   1. development of an ecosystem governance framework focused on Patient Identity and support technical stack development to promote decentralized identity leveraging a national patient identifier (curiously enough existing legislation in the US prevent the creation of exactly this specific patient identifier; advocacy groups working on overturning that approach)
   2. Patient ID TIPs into health data standards - working with INCITS; ISO TC 307
   3. Represent ToIP in advancing the concept of decentralized patient identity to health SDOs (ISO TC 215 - participation is also included in the desirable outcome)
3. Background and Context (see slides)
4. Deliverables
   1. to be documented in more detail in an upcoming meeting
   2. <discussion at this meeting?>
5. Milestones (see slides/wiki page)
6. General discussion
   1. Adrian - how many identifiers can a patient have?
      1. Jim - Industry standards around 5 identifiers to establish 85% level of assurance
      2. Adrian - (important to consider and answer this question) whether we are matching identities in a coercive way? What is going to be our position (in ToIP) as to how patients control more than one healthcare identifier?
         1. Dan Bachenheimer - US does not have a foundational identity similar to Aadhaar (de-duplicated ID) - to get to an authoritative source is a business decision from a healthcare community.
         2. Scott W - a working ecosystem at the patient record level would likely handle the topic
         3. Michael Shea - what is the focus/span of the TF - is this US centric or more global
            1. Jim - a combination of GSWG work and TIPs should be able to handle the topics originating from specific geographies
            2. Adrian - Why are we talking about healthcare/medical identity separately from other identities (leading to more elaboration on the question from IHE discussions)? Have been involved in health/medical information system in India and there is still the open question around self-sovereign identity
               1. Todd Gehrke - it is likely because it is an edge case where we want to enable correlation
   2. Paul Knowles - a couple of WGs and TFs at ToIP have intersection and overlap with the focus and deliverable at this TF. The semantics are going to be important for interoperability (due to globalization/i18n). DSWG would be very interested in the collaboration
      1. Jim - it is important to keep the conversation moving ahead on topics of governance and technical implementation (even considering the certain last mile issues which will arise)
   3. Philippe - need to consider how this is to be consumed for humanitarian efforts through international organizations. The reality of being able to follow patients across border is a tricky problem where SSI provides a promise of some sense of a technology solution.
   1. Paul - clinical trials, vaccination and supply chain in terms of SSI based approach to solving this topic
   2. Michael - cross-border issues are of significant importance. Even in the Nordics with digital ID systems, these are not recognized
   3. Daniel B - UNHCR related conversation; best example of cross-border identity is a passport (country of issuance + document number = globally unique). Needs a trust infrastructure to ensure that the globally unique document is accepted
   4. Paul Knowles - ongoing conversations in GLEIF - assurance for a digital system it is the same thing for an individual. And likely through a bio-metric based system
   5. 1. Adrian - how do we recognize the de-duplicated identity (using the example of Aadhaar) as some of these requirements will have a coercive approach.
         1. Jim - perhaps a whitepaper on the state of the topic comes before a governance framework conversation is brought up
            1. Adrian - a rubrics paper for patient identifiers would be a good start (for example, "The Rubrics of Decentralization" paper to be read/looked at)
   6. Michael - within the MyData.org world there are foundational dimensions of Business Legal Technical Societal (BLTS) - do we have representations from all the dimensions? Would be important when considering the approach to a governance framework.
      1. Adrian - The "S" dimension and the MyData.org is specifically relevant in context of work done on UMA (within the Kantara Initiative). The concept of "Regulatory Capture" around the work and topic of identity and establishment of identity
      2. Jim - what are the tenets in BLTS which we can adopt in the TF