Creating PHRs for adolescents is trickier than preparing them for adults. While childrens’ and adolescents’ PHRs are usually controlled by parents, there are some areas in which teens have a right to privacy, including any discussions about sexually transmitted diseases, reproductive health, substance abuse and mental health information.
At Boston Children’s Hospital, they’re grappling with the problem of a creating a PHR which protects the adolescent’s right to privacy and confidentiality of such information without sealing parents out of areas which are public. This is a difficult problem, given that confidential information is generally seeded throughout EMRs, writes the hospital’s Fabienne Bourgeois.
To address the complex problem of giving adolescents appropriate access to their PHRs, BCH has developed a custom-built portal to meet both hospital and adolescent patient needs, Bourgeios says.
Adolescent patients and parents access the portal separately, through linked accounts. Parents have sole access until the child turns 13, at which point both get access. At 18 years, the patient becomes the sole owner of the portal account, and unless other constraints exist, the parent link is deactivated, she notes.
Within the portal, sensitive content has been identified and tagged, such as pregnancy-related labs, genetic results, confidential appointments, and possibly sensitive problems and medication. Right now this data is filtered from both parent and adolescent accounts, but in the future it will flow only to the adolescent account. “This solution does take a lot of time and effort, but best replicates current clinical practice,” Bourgeious notes.
This is quite an interesting project. It’s good to see researchers taking on unique privacy challenges involved in treating adolescents. Any efforts which engage a population in their own health and make them confident their privacy will be protected are to be commended.