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No doubt, it’s crucial that parents actively participate in their kids’ care and wellness. After all, healthcare influences children’s physical, cognitive, and emotional development.

More and more these days, though, parents can plug into their kids’ health digitally and virtually. And while technology is no stranger to health care—electronic records have been available in most practices for decades now—a relatively recent law takes patient and parent involvement to a whole new level.

With the Final Rule of the Cures Act, parents can get both increased speed and detail when it comes to sifting through family medical information. But what should parents know about this law?

What is the Cures Act?

Signed into law in 2016 by President Obama, it aims to promote and fund research and treatment for various serious illnesses. But it also requires simplifying and improving patient access to their electronic health information. In April 2021, four years after first going into effect, the federal government implemented the act’s “Final Rule,” also known as the “Information Blocking Final rule.” This rule condemns hiding or blocking important data from patients. As a result, patients are able to access more detailed medical records more quickly, increasing their involvement in their own healthcare.

What's new about this Act?

Again, opening a patient portal and accessing medical records remotely is nothing new. But with the updated Cures Act, parents now have access to their child’s physician’s progress notes, which include the physician’s decisions, findings, assessments, and plans. Having new access to these notes facilitates and encourages open communication and instills a sense of reassurance and confidence in the parents.

“Sharing rules do really help parents access their children’s medical records more completely and easily,” says Dr. Richard Ash, physician advisor for Primary Care and Informatics at Stanford Children’s Health. “This is the primary purpose of this part of the Cures Act: providing for rapid electronic access to medical records, including and—this is the new thing—the actual physician’s progress notes, which is not something often shared before.”

Before the Final Rule, parents were usually given after-visit summaries that included important parameters, along with medication lists and (sometimes) patient handouts. But they never received anything that gave them a glimpse into the doctor’s internal process. Now, though, new access to physicians’ progress notes not only provide more transparency and understanding on both ends, they also chronicle what was discussed during the appointment.

“A lot of things are discussed at the doctor’s office, notes Dr. Ash. But then you get home and ask yourself, What did she say about that? Having the progress note is the best way to at least see what the doctor wrote down. It may not be exactly what was discussed, but it really does help jog your memory and give you a place to refer back to for all the advice, recommendations, and even what the doctor’s thinking.”

How does this relate to parents and their kids?

The responsibility of their kids’ health and safety is not a light one for parents. Therefore, having new and faster access to medical records and notes is really a key tool in the care of your child.

“As a parent of two, it’s great to have all my kids’ medical records and information and appointments in one place,” says Leona Wong, Stanford Children’s Hospital Director of Brand Strategy. “My kids don’t require complex care but they have things here and there that we need to monitor and keep track of. So it really helps me as a parent, to have everything in one location and trying to understand what I’ve talked to the doctor about.”

And doctors don’t only recommend taking full advantage of the Cures Act’s new rule; they also take advantage of its benefits themselves.

“I would encourage parents to take a look at those notes, Dr. Ash says. Yes, it’s basically medical terminology, so they may not understand some of it. But I think just reading through it is very reassuring to people. As a patient myself, with my own internist and other physicians I’ve seen, it’s really nice to be able to read their actual progress notes.”

Teenager health information

Keep in mind that parents won’t have access to some of their teenagers’ health information due to state and federal law. This information usually involves health issues related to substance use and abuse, sex and family planning, and behavioral health concerns. Teens can request and be entitled to privacy from their parents with those types of care. Having this privacy allows adolescents to manage their own health as they transition into adulthood.

How is this information accessed?

As of April 2021, your health care system should have enabled this feature in your patient portal. If preferred, you can also access data in person by requesting printed records. Ask your medical team for the best way to obtain the records you need and contact them for any additional questions.

“The parent does have the option to call us if they see something that’s missing, something that doesn’t make sense, contradicts what they remember, or has been left out—and we encourage them to call us—to present their concern to our staff of physicians,” says Dr. Ash.

Stanford Children’s Health too offers a thorough interactive online portal for its patients. To learn more, click here.

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