Embedded Files
Peer Production Saves Lives: Decentralized Solutions for Cystic Fibrosis Therapy
We create open source DIY hardware and software for cystic fibrosis therapy.
We collaborate with Sainte Justine Children's Hospital in Montreal, where these solutions are tested with patients.
We are approaching Health Canada for approving this open source DIY solution as a medical device.
Open network: Breathing Games & Sensorica
Custodian: Ludociels pour tous
Exchange firms: non
FAQ
FAQ
I'm a patient, can I use the PEP Master Instrument?
The PEP Master Instrument has not yet been approved by regulatory institutions. You can use it only under supervision with a medical doctor, in a research framework, which may require approval by the ethical body of the institution in which this medical doctor performs his medical practice and research.
I'm a medical professional (caregiver, therapist or doctor), how can can I use the PEP Master Instrument?
We can put you in contact with the research team at the Sainte Justine Hospital in Montreal, who is currently using the PEP Master Instrument with 40 patients, and developing the therapeutic practice. Sensorica can provide support for fabricating the PEP Master pressure sensor and Breathing Games can provide support for installing and using the game. Both organizations can also partner with you to write grant proposals to help you fund your operations.
I'm an open source hardware or software wizard, how can I get involved?
If you want to work on the game join Breathing Games. If you want to work on the pressure device, join Sensorica. Someone will help you acquire the technical skills and guide you. If you want to provide technical support to local medical professionals affiliates of Sensorica and Breathing Games can help you build local capacity to fabricate and support the Instrument, in collaboration with local medical professionals. Note that the use of the PEP Master Instrument by patients is not yet approved by regulatory bodies, so in order to help patients you must work with local medical professionals (see above).
Communication and coordination
Communication and coordination
Messaging: Sensorica Discord | BG Discord
Coordination: Sensorica Cacendar
Social media: YouTube | Twitter | Instagram | Facebook | LinkedIn
Other website: breathinggames.net
Notes
Notes
March 2025 - launching of GiveTH campaign.
February 2025 - starting Fabrication Validation work
January 2025 - web3 funding efforts, open doc : Design validation, Data management and transfer.
Dec 8 - fabrication of 20 new pressure sensor devices finished and delivered to Sainte Justine Hospital.
Oct 23 - all materials ordered for fabrication, see BOM.
Oct 19 - GameJam at Sainte Justine.
September 5 - All stakeholders have signed the agreement / contract for the PEP Master project, giving the ability to access the grant from the Sainte Justine Hospital.
June 2024 - Meeting of all Parties at Sainte Justine Hospital to formalize the collaboration for the Inven_T grant / project.
May 2024
May 17, meeting with Axelys, to understand their open science and innovation policy and see if we can collaborate on regulatory approval.
We were awarded a $100K Inven_T grant for the project.
April 2024
Submitting panel at the Canadian Science Policy Center conference #CSPC2024 - see working doc
Poster: Serious game-based positive expiratory pressure (PEP) respiratory physiotherapy in children with Cystic Fibrosis: a prospective pilot study on acceptability and co-creation. Congrès Canadien sur la Santé Respiratoire à Toronto le 12 avril 2024
Engaging intermediary organizations to find support for regulatory approval - see working doc
Tibi engaged Qortal community to test if platform is suitable for safe and secure data management
Starting February 2024
Bringing the electronic sensor up to ISO standards and applying cryptography and blockchain to establish trust in distributed fabrication of open source DIY artifacts - towards regulatory approval.
Inven_T application grant proposal - Awarded in March 2024.
Resources
Resources
| Source Code | Videos | Pictures | Code | Full documentation | Scientific communications |Inventory
PEP Master device
Open BOM, DIY manual
Mechanical part
Download full .skp model - You can open it in sketchup (it's free) and export other formats. Download STL files for bottom part, Middle part (base and optical fiber holder) and Top part.
Economic model
Economic model
The short-term economic model for this venture is based mostly on public funding and on gants from web3 platforms.
The long-term economic model for this venture is built around open innovation and distributed manufacturing (DIY).
At the core of PEP Master's capturing mechanism is what we call a trust-based economy model, described in this document. This core can be extended to ecosystem services.
In short, for the long run, the trust-based economy model relies on the fact that trust must be established between a doctor and a patient, based on the quality (safety and efficiency) of the PEP Master Instrument (hardware device and game). Digital infrastructure is used to provide certainty of provenance for the design of the PEP Master Instrument, plus an on-demand verification method for the fabrication. The certainty comes from a digital certificate, which the patient acquires (purchase of a non-fungible token) to provide to the doctor, and rewards, in the same process of acquisition, everyone involved in the effort of producing the instrument. This is possible using third generation DLT (digital ledger technology), together with their contractual and transactional primitives.
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More on p2p economic models
Governance
Governance
VENTURES under this COMMUNITY follow the OPEN VALUE NETWORK model's governance.
VENTURES are COLLABORATIVE, TRANSPARENT (anyone has access to the information that they produce) and OPEN (anyone can participate). They only produce things based on OPEN SOURCE technology. Ventures have a CUSTODIAN that represents them legally and acts as a trust for their tangible assets. Ventures can have multiple EXCHANGE FIRMS, which are commercial entities that move products and services developed by Ventures on the MARKET.
EXCHANGE FIRMS oblige themselves by contract with the CUSTODIAN to share PROFIT with all contributors to Ventures, from which they commercialize PRODUCTS.
Agreements
Agreements
EXCHANGE FIRM Agreement [provide link] - does not apply
See the Governance page for network-level and project-level governance and governance templates documents.
Planning
Planning
| Contributions (NRP-CAS) | Calendar | Decisions | - Log Contributions
Tibi works on validation of hardware fabrication.
Mayssam, Sacha and Tibi work on web3 funding.
Contributions accounting and spending
Contributions accounting and spending
Inven-T grant
Inven-T grant
in collaboration with Breathing Games, Sainte Justine Hospital and Ludiciels
Budgeting and Spending on Labour
Purchase of materials
You can find almost all bills in this folder
Contributors roles and tasks
Tasks and roles
Crowdfunding
Crowdfunding
Ongoing campaign on Giveth, funds destined to build trust-based infrastructure.
Allocation has not been discussed yet.
For total transparency see wallet on Etherscan
Grant applications to web3 platforms
Grant applications to web3 platforms
Ongoing funding campaign - open document.
Allocation will follow the planning.
Did you know?
Did you know?
You can launch your own venture, see how.
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