Accessing Patient Gateway: Information for Teens, Parents and Care Teams
During the teenage years, many children begin to take on more responsibility for their own health and well-being. But they also rely heavily on their parents and guardians for support and guidance, especially when it comes to navigating the healthcare system. At Mass General Brigham (MGB), recent changes to the way teens and their parents/guardians access health information in Patient Gateway — our secure electronic portal for health management — seek to strike the right balance between respecting a teen’s privacy and providing their parents/guardians with the information they need to know.
“When making decisions around access to protected health information, we needed to first take into consideration Massachusetts state law. But it was also important to consult with the experts within our healthcare system who understand the unique needs of their patients and their families,” said Lee Park, MD, chief patient experience officer. “We brought together colleagues from our Digital team, the Office of the Chief Medical Officer, the Office of General Counsel, Pediatrics, Behavioral Health and more in order to design a solution that would best serve our teen patient population and the parents/guardians who care for them.”
Accessing health information in Patient Gateway, ages 13 to 17
When a child turns 13, MGB encourages teens to register for their own Patient Gateway account. Parents/guardians must consent to the new account through a form in their existing Patient Gateway account.
“Parents/guardians were accustomed to accessing their child’s health information through Patient Gateway under the age of 13,” said Rajesh Patel, MD, MPH, MA, vice president of Digital Patient Experience. “In the past, when they turned 13, multiple categories of health information such as medications and notes were no longer available. After thoughtful consideration, we’ve designed a new model where the child, upon turning 13, opens their own Patient Gateway account with consent from their parent/guardian, and both the teen as well as the parent/guardian can view similar sets of health information, request medication renewals, complete questionnaires and see their after-visit summary.”
The health information that is available to view in both the teen’s account and their parent/guardian’s account was expanded and includes non-sensitive encounters, immunizations records, allergy information, medications and test results. Recognizing that parents/guardians may have access to their teen’s account, neither can view sensitive encounters, sensitive medications or sensitive test results.
“When a child turns 13, they are entitled to more privacy, so we’ve hidden sensitive information from Patient Gateway,” said Dr. Patel. “For example, if a teenager goes to see a gynecologist, whether it’s for a pregnancy, to prevent a pregnancy or some other need, they may not want their parent/guardian to see that particular specialist on their lists of providers in Patient Gateway.”
Ensuring teens have autonomy and access to the information they need
Michael Flaherty, DO, vice chair for Quality and assistant chief medical officer for the Department of Pediatrics, said that the goal in revising what information is viewable and what information is hidden in both teen and parent/guardian Patient Gateway accounts is ultimately to ensure teens feel safe seeking the healthcare they need and empowered to do so.
“Typically, both teens and their parents or guardians have the login information for the teen Patient Gateway account, so we can never be sure if the person logging into a teen’s account is the teen themselves or their parent/guardian. That’s why we’ve hidden sensitive information across the board and given healthcare providers the option to manually mark information as sensitive when they deem it appropriate,” said Dr. Flaherty. “Encounters related to obstetrics and family planning are among the areas of most sensitivity, as well as things like HIV and other sexually transmitted infection testing.”
Dr. Flaherty explained that the new model also protects parents’ privacy. “Teens previously had access to all of their prenatal records from birth and on, which often contain a lot of sensitive information about the parents. That could be anything from a sexually transmitted infection to a history of intimate partner violence. That’s all been removed from teen Patient Gateway accounts.”
Behavioral health is the exception
When it comes to behavioral health, especially medication, Erica Greenberg, MD, director of the Pediatric Psychiatry OCD and Tic Disorders Program at Massachusetts General Hospital (MGH) and Janet Wozniak, MD, director of the Child and Adolescent Psychiatry Outpatient Service at MGH, advocated strongly for parents/guardians to have more access to their teen’s information.
“In our field, after clinical encounters where medication is prescribed, we generally provide detailed instructions related to medication administration that are intended for the parents. In fact, a parent or legal guardian needs to consent to the prescription of these medications to anyone under the age of 18,” said Dr. Wozniak.
Both Drs. Wozniak and Greenberg have witnessed parents expressing concern when those medication administration instructions were no longer visible in Patient Gateway once their child turned 13. “We highly value privacy, and it’s something we discuss with patients and their parents, but it was concerning that parents were not able to access the instructions they needed in order to help their child.”
When they were asked to collaborate on a new Patient Gateway model, both were adamant that parents/guardians needed to have more access to important components of behavioral health records in Patient Gateway. “It’s about the safety of the child,” said Dr. Greenberg. “Protecting our young patients from harmful breaches of their privacy is of the utmost importance, but in our field the situation is typically the opposite. These parents want to help their children become more independent, but they need access to the provider instructions in order to best know how to help them.”
The goal: Doing what’s best for teens
With the exception of emancipated minors, the new Patient Gateway model is designed to protect the privacy of teens while also empowering them to take charge of their own health in collaboration with parents/guardians.
“I think it can be really hard as a parent to make this transition, and I think many may struggle with losing the level of access they were used to having,” said Dr. Flaherty. “But I also think it helps to force some really important conversations between parents and their children. As a pediatrician, I am very happy to see my patients gain autonomy as they grow.”
The new design is the result of a group of thoughtful caregivers coming together to do what’s best for their young patients. “Everyone’s goal is to do what’s in the best interest of our pediatric patients,” said Dr. Greenberg. “When making changes to Patient Gateway, it was really nice to see the experts in the various fields come together and work through the various scenarios to help us do just that.”