Parents Sue Minnesota Hospital to Enforce HIPAA Right of Access for Minor Child’s Medical Records
The parents of a 15-year-old child have filed a lawsuit against a Minnesota hospital for failing to provide them with full access to their minor child’s medical records. Under federal law – The HIPAA Privacy Rule – parents have the right to obtain a copy of the medical records of their minor children in the form and format requested. While there are exceptions to the HIPAA Right of Access concerning parental access to the medical records of minor children, none apply in this case.
The daughter of Shaun and Katherine Johnson was diagnosed with a rare chromosomal condition called mosaic Turner syndrome when she was aged 11. The condition requires lifelong heart monitoring due to elevated cardiovascular risks, and the parents require real-time access to their child’s medical records to help them effectively manage her care.
The parents lost access to their daughter’s medical records when she turned 12, when Fairview Health Services applied its policy of shutting off parental access to children’s MyChart medical records. Under the hospital’s policy, which is based on an interpretation of state law, access can only be continued if hospital staff conduct a private interview with the child, and the child and staff agree to restore full MyChart access to the child’s parents. The parents declined to sign the consent form and have therefore been refused access to their child’s medical records through MyChart.
The parents submitted a request for access to their minor child’s records via an Authorization for Release of Protected Health Information, and were provided with a copy of some of their daughter’s records; however, the request took three weeks to process, and the copy lacked important details required for the management of the child’s care. For instance, medical images can only be provided in electronic form via the MyChart portal.
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“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.”
The Center for Individual Rights (CIR), a Washington D.C.-based non-profit, public interest law firm dedicated to defending individual liberties, filed a complaint with the Department of Health and Human Services (HHS) Office for Civil Rights (OCR), alleging the refusal to provide parents with access to the MyChart portal for their minor children over 12 years of age was a violation of the HIPAA Privacy Rule.
OCR responded, confirming in a letter to the Privacy Officer of Fairview Health Services and CIR that parents are permitted access to their minor child’s medical records under HIPAA. OCR recommended filing a second complaint if the matter was not resolved, which CIR did six weeks later when the parents’ access had not been restored. The second complaint is still pending with OCR. OCR subsequently issued a “Dear Colleague” letter to the medical community confirming that, under HIPAA, and absent special circumstances, healthcare providers may not place additional limitations on parental access to their minor children’s medical records. In this case, the special circumstances do not apply.
Under Minnesota law, children have the right to decide who has access to their medical records related to pregnancy, sexually transmitted diseases, physical and sexual abuse, and substance abuse diagnosis and treatment. Fairview Health Services allows parents or legal guardians to have partial proxy access, excluding those areas, for minor children aged 12-17 years of age. Full proxy access is only granted with the child’s consent. Since the parents object to an intrusive, unsupervised interview with their daughter, they are prevented from having timely and complete access to their daughter’s medical records to the extent required to engage effectively in her care.
The lawsuit alleges federal law preempts state law and that Fairview Health’s policy is inconsistent with Minnesota law. The lawsuit seeks a declaratory judgment and permanent injunction ordering that the Minnesota Health Records Act requires providing the parents with unrestricted access to their daughter’s medical 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.”
