The Benefits of Online Records: Six Foster Youths’ Experiences with Healthshack
by Joanna Hernandez
Most life transitions, such as enrolling in a new school, obtaining health care, and applying for a job, require proof of identity and the disclosure of personal information. Most of us know where our birth certificates, Social Security cards, medical and financial records, and education and work histories are located, and can access them. We can also take steps to protect those records by keeping them in a secure place. However, many homeless and emancipating foster youth face unique challenges in both gathering and safeguarding their personal documents.
Electronic records, such as those managed by a system called Healthshack, constitute one way of meeting those challenges.1 Healthshack is a personal health record and information system that allows young people to electronically upload and store their personal information in one place.2 NCYL interviewed six youth about their experiences in connection with personal documentation, record keeping, and information sharing, and about the way they utilized Healthshack. Among other things, the interviews illustrated the value of one of Healthshack’s features: Youth are given complete control over the records stored in Healthshack and how they are used.
“Life Requires Documentation”
“Life requires documentation” is the slogan Healthshack uses to introduce and promote its service.3 The slogan hits at a core truth: As we navigate life’s transitions and transactions, we often need documents to back up claims we make about who we are and where we’ve been. We need proof of identity in order to rent an apartment, obtain medical care, or apply for government benefits. Photo identification is frequently requested or required. A youth enrolling in a school typically must produce proof of address as well as documented evidence of his or her educational background and immunization history.
Most young people don’t need to think about personal documentation. Their parents or guardians collect and keep track of their records and information for them. These tasks tend to be fairly straightforward: Youths often attend only a few secondary schools and see just a handful of doctors. However, some young people are in a very different situation. They do not have an adult collecting and safeguarding their important documents. Other youth have lived in so many places, attended so many schools, and seen so many professionals that tracking down personal records becomes difficult or impossible.
The Challenge of Documentation
In early June, NYCL spoke with six teenagers about their experiences in relation to record-keeping and personal documentation. Each youth was then, or had been, homeless or in foster care. The interviews took place in Sacramento at Wind Youth Services, an organization providing emergency shelter and other services to homeless youth and other youth in need.4 The youth first described how they became homeless:5
“My last semester of high school … my mom dropped me off at Loaves and Fishes where homeless people camp out and, um, she just left me and I didn’t know where to go.” – Stacia, 19
“So my mother wasn’t working. I was the only one that was working. I was supporting the entire household. … I had a bad history with my mother with mental health issues. She ended up having a confrontation with me. Instead of dealing with [the situation], I had my last straw, and I left [home] and I ended up homeless in my car.” – Jasmine, 18
“I got [to Wind Youth Services] when I was 14. My mom placed me here cuz she felt like she didn’t know what to do with me, because basically I wasn’t listening to her.” – Tiera, 19
“I’ve been [at Wind Youth Services] for, like, over a year, but I’ve been in a shelter for over four months now again, which sucks. My dad just left me when I was 14 and I don’t know my mom too well.” – Jessie, 18
Some of these youth had previously spent time in foster care. From the interviews it became clear that homeless and emancipating youth face two hurdles to moving forward with their lives: gathering personal information; and storing and safeguarding their records.
In some cases, the information simply was not available. In others, a parent had possession of the information but refused to share it. Stacia said: “My parents wouldn’t give me my original birth certificate or anything, so I had to go and get it myself. I had to go and get [a replacement] Social Security card because [my parents] wouldn’t give it to me. So I had to go and get another one. I had to go and get everything.”
Many of the other young people interviewed also had to seek out their records on their own. Said Tiera: “I had to reapply for my birth certificate. As far as transcripts, I had to go to Virginia to ask for it. It took forever.”
Safeguarding personal information, once obtained, can also be a challenge. Homeless youth appear to be at greater risk of identity theft. Jasmine said: “I used to keep everything in my car, and then I got robbed in my car. You know, nothing is safe. I didn’t have anywhere else to put it because I didn’t have a home. … I’ve had my identity both stolen on the Internet and physically robbed. I’ve seen it from both sides. It sucks, and [it’s] really bad damage control when you have to fix something that someone else did. And I’ve been through it.”
An Electronic System
One of the services available to young people at Wind Youth Services is Healthshack, a personal health record and information system created to serve the needs of people between the ages of 11 and 22 who are homeless, in a shelter, or in the foster care system. Healthshack members can upload medical files, education records, job histories, financial information, and other identity-based documents to a database. The information can be accessed only by the member, using a password. And Healthshack uses SSL encryption to protect sensitive information online.6
Members can access their accounts and upload their information from any computer. The youths interviewed by NCYL used scanners and computers at Wind Youth Services to upload their information, but they also cited libraries and schools as places to upload records. Healthshack was developed through a partnership between Wind Youth Services, the UC Davis Adolescent Medicine program, Linkage to Education, and FollowMe.com,7 and is funded in part by Sierra Health Foundation and United Health Group.8 The Casey Family Programs also contributed to Healthshack’s development.9
In addition to giving young people a place to store their information, Healthshack also gives them a way to share that information with others. According to Healthshack’s privacy agreement, there are three ways members can provide information to third parties: (1) the member can print out a summary report and give it directly to another party; (2) the member can voluntarily provide his or her user name and password to a third party, who can then view the member’s information; and (3) the third party can sign up with Healthshack and become a Network Provider.10
A Healthshack Network Provider can enter information into a member’s record through its own provider account. Organizations that have signed up to be Network Providers include health providers, mental health providers, youth advocacy organizations, and support groups. Advocates and organizations must receive training to become Network Providers and must comply with applicable laws such as the Health Insurance Portability and Accountability Act.11 Only trained employees of a Network Provider may use that provider’s account to input data into an individual member’s files.12
Importantly, while Network Providers can enter data into a member’s account, they cannot automatically view that member’s information. A member must affirmatively grant the Network Provider authorization to view his or her record. Such authorization can be tailored: A member can grant a Network Provider partial or full access and thereby control how much information that provider can view.
Kevin, one of the young people interviewed, described how a member can customize his or her privacy settings: “You [are] talking to your dentist and upload your visit, and you don’t want [the dentist] to see that you have schizophrenia. You can click that off. Different aspects of your health record you can cut off, no matter what it is. If you want them to see just your physical health, that’s all they can see.”
The Value of Controlling Access
The youths interviewed clearly valued and appreciated the ability to control and limit third-party access to their personal information. Several youth indicated that this feature of Healthshack motivated them to give the system a try. Having the ability to customize access to their records wasn’t just a practical benefit; one youth said, “I manage my own records, which makes me feel empowered.” Healthshack provided a measure of autonomy and security that had been lacking in these youths’ lives.
The youth apparently used the control they had over their personal records carefully. According to one youth, deciding whether or not to share information “depends on the relationship” between the youth and the third-party provider. Several youth indicated that they preferred downloading records to give to a third party rather than giving that party access to their member account.
One youth acknowledged the importance of information sharing in certain situations by relating the following episode: “We had one girl who moved out of town, and she had a Healthshack account. She was pregnant and [she] collapsed in a grocery store, and she was allergic to the medication they were going to give her. But they pulled out her medical card, and that kept her [from] having an allergic reaction [while] pregnant, which would have been worse.”
For many homeless and foster youth, the task of accessing and controlling personal records can be an immense challenge. Electronic systems like Healthshack, which allow youth to store, access, and share their personal information, constitute one way of meeting that challenge. The six young Healthshack members interviewed by NCYL said they highly value Healthshack’s capacity to precisely control what information is shared, and with whom.
Protecting and securing youths’ sensitive information is critically important. In addition to the federal and state laws that protect personal information, policies are being developed that help homeless and foster youth gather, store, and securely disseminate personal information. Initiatives to address these and other needs of struggling youth are part of broader advocacy efforts aimed at helping these youth survive and prosper.
Joanna Hernandez was a 2011 summer law clerk at NCYL, working on adolescent health, privacy, and consent issues. She is in her second year at Berkeley Law School.
See Wind Youth Services, Healthshack, http://www.windyouth.org/healthshack (last visited July 20, 2011).
- See Healthshack.info, http://www.healthshack.info/ (last visited July 20, 2011).
- Healthshack.info, About Healthshack, https://www.healthshack.info/about.html (last visited July 19, 2011).
- For more information on the programs and services Wind Youth Services provides, see Wind Youth Services, Programs, http://www.windyouth.org/programs (last visited July 20, 2011).
- Personal interview on June 21, 2011, at Wind Youth Services in Sacramento, Calif.
- See Wind Youth Services, Healthshack, http://www.windyouth.org/healthshack (last visited July 20, 2011).
- See Healthshack.info, How to Use Healthshack, https://www.healthshack.info/how_to_use.html (last visited July 19, 2011).