Advocacy organization Patient Privacy Rights has published the Privacy Rights Framework, with 15 core principals comprising more than 75 auditable criteria to measure and align privacy policies to acceptable business practices.

The Framework is designed to help measure and test whether health information systems and research projects comply with best privacy practices in such areas as whether patients have control over their protected health information, an organization obtains meaningful consent before disclosing data and obtains new consent before secondary data use occurs, patients have the ability to selectively share data, and the organization uses servers housed in the United States, among other factors.

The framework is available now for all stakeholders. However, Patient Privacy Rights will develop a system to permit licensing for entities that want to be formally approved by the organization to enable consumers “to tell the good guys from the bad guys.”

The core privacy principals are:

* Patients can easily find, review and understand the privacy policy.

* The privacy policy fully discloses how personal health information will and will not be used by the organization. Patients’ information is never shared or sold without patients’ explicit permission.

* Patients decide if they want to participate.

* Patients are clearly warned before any outside organization that does not fully comply with the privacy policy can access their information.

* Patients decide and actively indicate if they want to be profiled, tracked or targeted.

* Patients decide how and if their sensitive information is shared.

* Patients are able to change any information that they input themselves.

* Patients decide who can access their information.

* Patients with disabilities are able to manage their information while maintaining privacy.

* Patients can easily find out who has accessed or used their information.

* Patients are notified promptly if their information is lost, stolen or improperly accessed.

* Patients can easily report concerns and get answers.

* Patients can expect the organization to punish any employee or contractor that misuses patient information.

* Patients can expect their data to be secure.

* Patients can expect to receive a copy of all disclosures of their information.

The framework is available here.

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