Parents Sue Hospital to Enforce Federal Right to Access Child’s Electronic Medical Records 

The Center for Individual Rights (CIR) has just filed a federal lawsuit on behalf of Shaun and Katherine Johnson, Minnesota parents fighting to regain access to their minor daughter’s electronic medical records after a hospital system cut them off without legal justification. CIR first filed two complaints with the U.S. Department of Health and Human Services’ Office for Civil Rights, which responded with guidance confirming the Johnsons’ right under federal law to access their daughter’s records in the form they requested. Fairview Health Services ignored that guidance and still refuses to budge—leaving the Johnsons no choice but to go to court.

When she was just 11, the Johnsons’ daughter was diagnosed with mosaic Turner syndrome, resulting in cardiac abnormalities requiring lifelong management and treatment. Her parents need access to her electronic medical records to review doctors’ notes, test results, imaging, and other information necessary to coordinate her care. But after their daughter turned 12, Fairview revoked Katherine Johnson’s access to the hospital’s MyChart record system and told the family that their minor daughter would need to meet alone with hospital staff and give consent before her parents could regain access—a blanket policy Fairview applies to cut off parent access when a child turns 12 years old.

Fairview offered the Johnsons another unreasonable alternative: Request their child’s records outside MyChart, which might be provided in paper or other form within 30 days. For parents managing a serious medical condition that involves regular scans and electronic imaging, delayed and piecemeal records are not a meaningful substitute for real-time electronic access that federal law requires the hospital to provide.

Parents don’t need a hospital permission slip to view their own minor child’s medical charts.

“When your child is diagnosed with a serious condition, every appointment, test result, and next step matters,” said father Shaun Johnson. “Instead of allowing us to manage her care through the normal MyChart system, Fairview forced us into a delayed, inadequate, and burdensome workaround.”

Fairview cites Minnesota privacy law as the basis for its policy, but the hospital system is misreading the state law. Minnesota recognizes narrow confidentiality protections for certain sensitive categories of medical care involving minors—none of which apply to this case. Those limited exceptions do not permit a hospital to impose a blanket rule cutting off all parents’ access to ordinary medical records when a child turns 12. And even if state law denied the Johnsons’ access, federal law would still prevail.

The Health Insurance Portability and Accountability Act (HIPAA) recognizes parents as personal representatives with the right to access their minor children’s health information—with limited exceptions that have nothing to do with this case.

The federal government has already weighed in on this specific dispute. After CIR filed two complaints with HHS, arguing that Fairview’s policy violates HIPAA and burdens the Johnsons’ constitutional rights as parents, its Office for Civil Rights sent a letter directly to Fairview explaining that parents generally have the right to obtain their minor children’s medical records in the form and format they request. It then issued a nationwide Dear Colleague letter to the medical community making the same point. Despite two federal interventions, Fairview has continued to deny Shaun and Katherine’s access to their daughter’s MyChart records.

“A hospital cannot apply state law to lock parents out of their own child’s medical records,” said CIR Litigation Director Caleb Kruckenberg. “Federal law is supreme. Our federalist system is built to better protect individual rights—in this case, the parental right to supervise and participate in a minor child’s medical care.”

The Supreme Court has long recognized that parents have a fundamental right and duty to direct the care and upbringing of their children. A hospital may provide medical care, but it does not replace the parent. And a state privacy law cannot be read so broadly that it cuts parents off from obtaining the very records they need to care for their child.

Read more about this case.

Read the complaint.