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Open Treatments Foundation

Vision, Mission & Strategy

Vision

The future of humanity must not suffer from lack of diagnosis counts of diseases. Build a durable social infrastructure transcending geopolitical boundaries whose only purpose to serve every single human being.

Mission

Build a free-forever and publicly accessible platform to display accurate counts and related statistics of diagnosed patients across the world for all genetic diseases. Using true anonymization techniques, we will ensure the collected data does not retain any value beyond the the basics necessary to generate statistics.

Tenets / Guiding Principles

These principles guide our actions and decisions. They fundamentally shape who we are and what we do as an organization. They align with our Vision and Mission.

  • Durable social infrastructure: Connect is not a project. It is a social infrastructure built to last a hundred years with the sole purpose of counting every person with any disease on the planet.
  • Public Ownership, Private Stewardship: Software, data, and any associated materials are considered public goods ie. no single owner. A single entity (OpenTreatments at the moment) acts as a steward to build, maintain and make these public goods available to everyone. Stewardship might change in the future, but the ownership model will never change.
  • Trust is the product: Transcending geopolitical boundaries requires a product and governance model built to foster trust at every level. Software is secondary, trust is primary. Trust that data data will never be misused by anyone will encourage participants to liberally share data with us.
  • Distribute Value, not Accumulate: Data sharing networks are considered in the general wisdom to be accumulators of valuable health data. Accumulation of value causes perverse incentives to monetize data against our mission of serving every human. Instead, we will consume data just enough to produce desired outcome and distribute the value free-forever to everyone.

Strategy

  • Prove operational model by building a small-scale anonymized data sharing network: OpenTreatments will build and prove the operational model by building a fully anonymized network of participants sharing data within the USA. We will display counts of diagnosed patients in a publicly accessible website under OpenTreatments umbrella. The software will be fully open source and built in a decentralized fashion. The data sharing network will include diagnostic companies, patient registries, natural history platforms, and hospital systems that hold diagnosis information about diseases. We will build data sharing systems to be compliant with HIPAA, GDPR and other privacy regulations. Primary objective is to demonstrate feasibility of the solution and highlight scaling challenges. We will build a succession plan to hand off stewardship to another entity to scale the platform to the next level in accordance with the vision, mission and tenets.
  • Handoff to a new steward to scale: OpenTreatments will hand over stewardship to another entity that can scale the Connect platform to include non-US data providers, automated data collection and other improvements in accordance with our mission, vision and tenets.