Helping teens — and their families — manage online health care

CCHE’s Creagh Miller knows teens do best when technology supports trusting relationships

by Creagh Miller, MPH, research associate at the Center for Community Health and Evaluation (CCHE) at Kaiser Permanente Washington Health Research Institute (KPWHRI)

My friend Craig and his wife have always had a great relationship with their daughter’s physician. They have especially appreciated being able to email her, make appointments online, fill prescriptions, and print immunization records for school. But that access changed a year ago when their daughter turned 13 and all online features on My Chart became unavailable to them. At that point, they had to go to the clinic or phone their health care team to request immunization records and everything else. This has been a real headache for them, requiring a lot of new time and effort.

Why the switch? Because when a child turns 13, privacy laws make certain information between teens and their health care providers confidential. This privacy is intended to encourage teens to openly discuss issues such as behavioral health care, substance use treatment, and reproductive health care with their doctors and other providers. But it also means that some information can’t be automatically shared with parents and legal guardians. While adhering to the law helps protect teens’ privacy when needed, it also results in logistical challenges for teens, their families, and their medical providers: Teen patients cannot access online medical records nor send secure electronic messages until they turn 18. Unfortunately, parents also lose access to their child’s online health record at age 13, which creates a gap in health care coordination for teenagers.

Kaiser Permanente Washington is not the only health care organization in this situation; it is something every health care organization with an online patient portal like My Chart has to grapple with. What gives me hope is that a variety of other health care organizations — including several other KP regions — have struggled with this issue and found ways to give their teens and proxies access to online health services while protecting teens’ privacy.

Advisory group recommended improvements

To address this issue, the Group Health Foundation in 2015 asked KPWHRI’s Center for Community Health and Evaluation (CCHE) to convene an interdepartmental advisory group to identify promising practices for online teen access. The group included representatives from privacy, compliance, legal, clinical and behavioral health services, digital services, clinical informatics, and customer experience marketing.

I was glad to be part of this advisory group because it felt like very important to work together to grapple with how to provide the best care to our members. My past work as a health educator and program manager with teens clearly showed me the importance of helping them build an open and trusting relationship with their health care provider, especially when they want to independently manage aspects of their health. It’s been really fulfilling to work on such a tangible project aimed at supporting teens in accessing information that can help them make healthy choices and take ownership of their own health.

From the very beginning we have worked with Gina Sucato, MD, MPH, director of the Adolescent Center, who brings an equal amount of passion and commitment to the work. She often hears from parents who are frustrated that they can no longer use online features to manage their teens’ appointments, ask quick questions, and refill medications. Communication with clinicians is especially important to parents of youth with chronic medical conditions which require ongoing care coordination. She felt this project’s success in enabling communication via online secure messaging could be a big win in terms of convenience and efficiency for both providers and families of teens. For example, my CCHE colleague Elena Kuo, who has a child with a chronic health condition, was excited to get involved after seeing her friends struggle with communication once their kids reached adolescence. She realized that for many teenagers our system was creating unnecessary barriers to care, and she wanted to help close that gap.

We’ve crossed the first hurdle; more steps ahead

We gathered data from Kaiser Permanente Washington (then Group Health) members, key players within our delivery system, and other health care organizations who have done work on this issue. In early 2016, we presented KP Washington leadership a white paper, authored in collaboration with Drs. Gina Sucato, David Grossman, John Dunn, and Jeff Lindenbaum. The paper recommended ways to best expand online access for teens and proxies (such as their parents or guardians). These recommendations were accepted, and an interdepartmental implementation team has been working hard to make expanded access a reality. This spring we began to roll out new features to expand access.

In April, 2017, we released the first two features, allowing teens’ proxies to view and download immunization records and exchange emails with many of their teens’ providers. In October, we plan to release a feature so proxies can refill medications online. In addition, CCHE is working to evaluate implementation of these features, understand who is utilizing the system (and who isn’t), and document what’s working and what could be improved.

We’ve crossed the first hurdle of putting thoughts and plans into action; this set of features should increase efficiency for parents and KP staff.

But there is so much more to do, we can’t stop now! Teens would greatly benefit from the same features and many more. Those who work with teens and their parents hear consistently that they want to continue to help their teens manage their health care online. So we must keep working at expanding this access while protecting the privacy of certain health-related information. Further expanding online access will:

  • Improve the quality of care of teens.
  • Increase patient, parent and provider satisfaction.
  • Improve the efficiency of care delivery.

There is agreement within KP that this is an important priority. Our commitment to providing high quality care gives me a lot of hope that we can continue to make progress and deliver the best possible online tools and care to all our members.