Teen homeless organizations, UC Davis Children's Hospital collaborate to
create "HealthShack"

Young man displaying his HealthShack card © 2009 UC Regents
HealthShack participants have identification cards to access key health information.

System helps homeless Sacramento youth track their health information records

For homeless youth, finding a way to keep track of your health records can be as challenging as finding a place to lay your head. Whether your inoculations are up-to-date and what kind of birth control pill you’re taking can get lost in the shuffle.

Now a new program — a joint effort between UC Davis Children’s Hospital and two nonprofit youth service organizations — is taking advantage of teens’ tech savvy to help them manage their health records.

Called HealthShack, it exists largely in cyberspace and gives youth who are homeless or in foster care, or who have "aged out" of foster care and don't have health insurance, a place to put their health and other personal records where they're just a secure passcode and mouse click away.

The personalized health information system, under development for the past two years, today announced a substantial boost — a grant of $400,000 from PacifiCare and United Health Group.

“Our experience with the youth we work with who are homeless or in foster care is that, if they’re getting any care at all, it’s very haphazard,” said Elizabeth Miller, the program’s co-founder and an assistant professor of pediatrics at UC Davis Children’s Hospital.

Dr. Miller © 2009 UC Regents“Kids need a lot of education around why you would even need a personal health record.”
— Elizabeth Miller

“Kids in foster care are constantly being bounced from one place to another. We’ll have a teenager come into the general pediatrics clinic and, when you take their health history and ask them for their immunization record, they’ll look at you like you have three heads,” she said.

To devise HealthShack, Miller partnered with two Sacramento-area nonprofit agencies serving homeless and foster care youth — WIND Youth Services and Linkage to Education. Teens in both programs were recruited to develop a Web site that would appeal to youth and meet their needs.

“Kids need a lot of education around why you would even need a personal health record,” Miller said. They usually say something like 'I've never been sick. Why would I need that?’”

Miller said their point of view grows out of not receiving consistent, high-quality health care and not having enough help holding onto health records and other important personal information.

“They take the fragmentation of health care for granted and think that an emergency room is the place where primary care is supposed to happen,” Miller said. “The idea that there would actually be a doctor who routinely takes care of you who would help take responsibility for your continuity of care is news to them.”

Teen girl checks HealthShack online services © 2009 UC Regents
Teen girl checks out the HealthShack Website.

HealthShack is the sibling of a health information management platform originally developed for another highly mobile group — migrant farm workers — who face similar issues of being uprooted and having multiple health-care providers.

Started in Napa and Sonoma counties nearly a decade ago, the migrant workers health information Web site — called Follow Me — now stores personal health information for migrant workers throughout the state. Its developers contacted Miller and asked if she thought it would translate to homeless youth.

Miller said that when she was approached about working with Follow Me two years ago she jumped at the chance to develop programs for some of her most vulnerable patients.

With WIND Youth Services and Linkage to Education as partners, the program was piloted with a group of six youths from each organization who became “health ambassadors” and participated in developing a Web interface that would appeal to young people.

The youths suggested incorporating a videotaped orientation to the Web site, which included counseling on confidentiality, and they advocated expanding the information to other important documents — like birth certificates and Social Security cards. They also wanted a section called “Bragging Rights,” where they could put things they were proud of, like report cards.

The teen health ambassadors remain involved as peer advocates, encouraging other youth to take advantage of HealthShack.

Health information is developed when Miller and her colleague, UC Davis associate professor of pediatrics Dan Martineau, see the youth in clinic, help develop their medical histories and direct them to HealthShack.  Two volunteer public health nurses at Linkage to Education and WIND Youth Services also work with the teens to input their health information into the system.

UC Davis Children's Hospital

UC Davis Children's Hospital is the Sacramento region's only comprehensive hospital for children. From primary care offices to specialty and intensive care clinics, pediatric experts provide compassionate care to more than 100,000 children each year and conduct research on causes and improved treatments for conditions such as autism, asthma, obesity, cancer and birth defects. For more information, visit the UC Davis Children's Hospital Web site.

More recently, a partnership with Sacramento State University's community health nursing program has created an ongoing relationship with public health nurses and nursing students to work with the teens to input health information into Health Shack, provide health education, and coordinate their care.

“Then, ideally the way it works is that enough of a relationship gets built so that you can say to them, ‘Hey, you haven’t had a pap smear in awhile,’ or ‘You haven’t had a tetanus shot. Maybe you should go to UC Davis to see Dr. Dan or Dr. Liz so we can get this taken care of,’” Miller said.

In addition to the information included on the Web, participants in HealthShack are given a plastic identification card that includes their name, date of birth, a list of medications they are taking and other emergency contact information.

“We’ve learned that making a connection with youth, building on that relationship of trust, and providing them with useful tools to engage them is the way to help them maintain their health,” Miller said.