Patient and caregiver advisory voice
Reviews plain-language materials, burden expectations, accessibility, patient priorities, and community trust concerns.
Governance
Trust needs visible roles, review paths, and public accountability.
This page explains how MDA reviews collaborations, protects patient priorities, and makes governance expectations visible while the advisory roster continues to grow.
Governance roles
Who is represented in review.
Research and data-use review
Reviews proposed research uses for purpose, data minimization, consent fit, return of value, and patient burden.
Privacy and security review
Reviews privacy risks, access boundaries, incident response expectations, and safe public reporting practices.
Partnership review
Reviews commercial, institutional, foundation, and advocacy partnerships for patient benefit and conflicts.
Public collaboration registry
Data and partner activity is understandable.
Review standard
Every governed collaboration answers the same core questions.
What is the purpose and who benefits?
What data is needed, and can the request be minimized?
What consent pathway applies?
What burden does this create for patients and families?
What value, evidence, funding, or findings return to the community?