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Healthcare Working Group (HCWG) Patient Subgroup Meeting
June 22, 2018
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Laboratory use case continued: problem statement and defining personas
The group agreed on the problem statement: how to capture longitudinal user data across silos in order to inform algorithms for treatment, diagnosis, etc.
The individual is at the center of this work along with stakeholders from the individual's “sphere of trust” - the healthcare ecosystem that individuals engage with (providers, labs)
How do we define the domain of this effort (ie what is inside and outside the box)?
The individual/patient is at the center given that consent must be given to share information
Connecting siloed Providers/laboratories/other data sources (EHRs/ECGs) are also inside the box
Point was made that the patient is not always the initial gatekeeper of data (example was given of a diagnosis not wanting to be shared directly with a patient - cancer diagnosis for a child for example) - so we have to take those use cases into consideration
Single source of truth problem
How do we ensure a single source of truth for data points (ie if we pull data out of current systems to aggregate, how do we ensure it doesn't become out of date)
To solve this, no data will be stored on the blockchain, but instead hashes for the individual and their pieces of data will act as pointers to the validated data
The individual would have power to determine what pieces of data do and don't get shared (ie HIV status not wanting to be shared)
“Ownership” of data
Personas will be discussed at a later time
Wrap up and next steps
Place for collaboration between meetings was requested:
This seemed like a good option as when we get into build, I'm assuming this is the tool we'll use. Right now we'll use the wiki, where we will have out problem statement and continue to build the use case. This is an open repo, so everyone should feel free to edit, but please make comments when you make changes so that we know what changes have been made