# Solid Practitioners - 2025-02-06

## Meetng Date
* 2025-02-06

## Facilitator
* Jeff Zucker - [e-mail]

## Scribe
* thhck

## Participants (please add yourself)
* [Matthias Evering](https://solidweb.me/testpro/)
* [elf Pavlik](https://elf-pavlik.hackers4peace.net)
* [Philippe Duchesne](https://github.com/pduchesne) (https://solidbench.dev)
* Theo - [thhck](https://github.com/thhck)
* Marc- (https://[e-mail])
* [Frederick Gibson](https://graphmetrix.com/trinpod-server)
* [TallTed](https://github.com/TallTed/) // Ted Thibodeau (he/him) (OpenLinkSw.com)
* Rahul Gupta
* Areeba Aziz
* Hadrian Zbarcea
* Damon
* Jeff (Datasolids)
* [Rui Zhao](https://me.ryey.icu)
* Brandon (Datasolids)

## Agenda

* Announcements
* Call for Scribe

* New Member Check-in (brief intro, current work)

##

### round of introductions

ewingson: maintain and offer solid server at
- https://solidweb.org/(NSS 5.8.3)
- https://solidweb.me/(CSS 7.1.6)
- https://teamid.live/(CSS 7.1.6)

Rahul: Still room for 1 speaker for the solid symposium, drop me a mail if you want to talk there

Arreba: new here, work at (amazon?) as SE, interested in Solid for a chat protocol.

Jeff Zucker: Arreba looking for job position. If anyone looking for job position feel free to share it here

elf Pavlik: Had call with activityPod ppl with whom I'm collaborating to implement SAI

Marc Haddle: work on Data Solid, work on patient data for health care. Use case to aggregate health data spread into different place into one pod that we give to the patient. work on a UX that is mobile optimize the patient can acces it from a phone. Concept is around "custody" of data for highest measure of control over that data. Ownership only gives limited control.

Areeba: reminds me of the Jane App - a Canadian based company - health care website that allows patients to have their own patient data

Hadrian: Working on adoption and outreach of Solid. [...] Editor for the use case for the w3c lws group. Work for inrupt, who created a wallet for solid pod, its a open source mobile app. Mini hackathon running start on monday (https://www.inrupt.com/event/solid-hackathon/home)

TallTed: Working with OpenLinkSw since 2000 on stuff related to solid since long time.

Philippe Duchesne: SE with background in data, working on https://solidbench.dev plateform, working on retail and anotation use case and integration with LLM to anotate document in pod with llm.

Fred Gibson: ceo of graphmetrics, build trinpod . Just finished integration with oracle ...? we work on digital twin technology. This year we'll make our onthology more public.

Brandon: product developper of the datasolid working on CSS.

Rui: post doc at Oxford uni, at EWADA project, work on AI and data governance, control, privacy. Allow ppl to control their data on the digital world

##

JZ: march 6 we'll have a meeting focused on transportations. We we'll bring ppl who work on the field not necessary related to solid, w'll have domain expert and ppl working on other decentralized options.

Rahul: do you speaker for this meeting ?

JZ: yes we do: Michiel, [ppl from switzerland?] already 6 speakers.

##

FG: Question for Marc: [... how did you deal with medical records ?]

Marc Haddle: Patient own the data but provider own the record. If the patient request the record the provider has to give the record [because of law ?] in FHIR. Health data can have more than one owner ( the patient, but perhaps also the lab ): who has custody of the data ? solid is the only framework that can solve this issue.

FG: Feels like solid can have another "mode": lab can have a "control" mode for the data and patient can have a "read" and "share" mode.

TT: Patient modifying their data can be prevented with [Verifiable Credentials](https://www.w3.org/TR/vc-data-model-2.0/) (VCs), among other methods of signing over data. VCs are meant to have semantic content as well as syntactic content, making them well suited for integration and crossover. Selective Disclosure can also be used with VCs, allowing the patient to hide (but not modify) some data (i.e., specific statements), while sharing some record(s) that were retrieved from one provider with another provider.

MH: People who want to edit their medical record is very small, most ppl want to share it. [..]

PD: Ownership and authenticity are two different things. When it comes to authenticity, VCs are a good way to achieve it

MH: [..]

Rahul: There is a legitimate case of modifying medical records. Had some blood work done, and some data was missing on the electronic record from the lab, as compared to the paper record from the same lab for the same tests.

MH: Care everywhere: how can patient move their data around to different EHR. Not working well in practice.

eP: LWS use case about delegation. It is the cleanest way to accomplish that. We implement that in SAI. WAC and ACP ar bad to support delegation. me says:
https://github.com/w3c/lws-ucs/issues/104
https://solid.github.io/authorization-panel/authorization-ucr/#uc-delegation-subset

Areeba: Would be more a legal and social change rather than tech. change.

MH: We provide patient with datastore to make them part of the process

Rz: Related to Pavlik's questions, are there any existing work facilitating patients to manage the scope of the usages of their data (not just the scope of data to be used)?

MH: veeva offer an app where you can store medical record but personal data on company server and veeva where scraping it, anonym. it and sell it. Created a scandal, veeva as custody over the data rather than the patient.

Rz: How was veeva managing data control?

MH: user could manage and push data to EHR, but patient could only view data and need to call veeva to share data. So patient delegating to third party instead of being in control.

MH: today hard to get data in for clinical trial. Sometime its time sensitive ( cancer for eg ) and today take too long to find participant in time. The notion of the individual has the ability to participate by themself doesn't exist right now and could be enable with solid, and that what we work on. Enable the patient to participate.

RZ: Agree, my work is in the same area.

MH: in a garage, you own the car but they have custody over your car during the reparation. That's the different that solid allows. In health care this is important.

JZ: the issue of deletion. Some health condition tracker can keep data for a defined time, based on the company policy and not the patient need ( case of a friend who can data deleted from a health issue tracking app that removed all of his data)

MH: more and more ppl realize they don't have their data. [...]
tech is great but legal and governance that need change