How Sofirene Protects Your Health Information

Your information belongs in trusted hands

Sofirene is being designed to help you understand who can access your health information, what they can do with it, and how sharing is managed. The aim is to make these choices clear, so you and the people helping with your care can understand your arrangements.

Sharing with family and caregivers

An authorized parent or caregiver is intended to be able to invite another person to an existing patient profile, without having to recreate the patient’s medical information.

For example, a mother with the appropriate authority could invite a father to help manage their child’s healthcare. They would be working from the same health story, with access based on the permissions granted to each of them.

Receiving an invitation does not, by itself, establish legal guardianship. Permission to help with a profile and legal authority over a child’s care are separate matters.

Knowing who has access

As these features become available, Sofirene aims to give you a clear view of the family members, caregivers, and healthcare organizations that have access to your information, along with the permissions each holds. You should be able to understand who can view information and who can help manage it.

Taking control of your information

Sofirene is being designed so that a patient whose identity has been independently verified, and who has the appropriate legal authority, can review existing sharing arrangements. They could then decide whether to continue, change, or end future sharing.

Taking control would not automatically remove family members or caregivers. The intention is to let you review their involvement and decide how they should continue to help with your care.

Respecting the past while protecting the future

Ending future sharing does not erase information someone has already received. It also does not end a healthcare provider’s independently established access for treatment or legal reasons, or other access established independently under the law.

Sofirene is being designed to distinguish information shared before a change in permissions from information recorded afterward. For example, if sharing with a caregiver ends, a report already shared with them would be treated separately from a new report added later. The new report would be governed by the sharing arrangements in place at that time, while any independent clinical or legal access would still be respected.

Preserving your health story

Medical information evolves. A medication dose may change, a test result may be clarified, or an error may need correcting. Sofirene aims to preserve the original information alongside later corrections, where each came from, and when changes occurred.

The goal is a trustworthy medical history that helps you and your care team understand how your story developed, rather than simply showing the latest information.