Data Rights Trust

Independent protection of patient data rights.

The Data Rights Trust independently protects patient data rights. Its duty runs directly to individuals — not to the network’s operator, to payers, or to providers. It independently oversees and protects patient data rights: privacy, access, consent and accountability for how information is used. The governing documents call those protections the Patient Rights Floor.

What the Trust does

• Holds a fiduciary duty to patients, directly.
• Independently oversees and protects consent, access and data rights on behalf of individuals.
• Advocates for patients at the governance layer — including where patient interests and operating interests diverge.

Complaints from affected Individuals, their lawful representatives, Members and Participants — including complaints about SHN — go to the Network Accountability Office, an SHN function that receives and investigates them and reports the outcome. The Trust’s governance role is separate from that complaint function.

Part of a governance framework built so no one party is in control: the Governance Council safeguards the common commitments, Smart Health Network PBC builds and operates the Network, the Data Rights Trust independently oversees and protects patient data rights, and the Participant Advisory Council brings participant experience into how the rules develop.

Inquiries: governance@smarthealthnetwork.org