NLM Funding Spotlight | After Foster Care, Empowering Youths with Personal Health Records

There are 427,000 children in the custody of child protective services (i.e., foster care) in the United States; approximately 5,000 youths emancipate, or age out, annually. Health care outcomes are poor, in part due to lack of access to medical history.
With NLM grant funding, Dr. Judith Dexheimer of Cincinnati Children's Hospital Medical Center is helping empower youths aging out of the foster care system to access their personal health records. Using the Health Hero online platform, Dr. Dexheimer is providing emancipated youths with access and control over their own personal health records, improving health care knowledge and utilization as a result.
reporter.nih.gov/project-deta...
Transcript:
[Dreyana Dunson] I've been through 18 foster homes, five group homes, and five shelters - five different shelters - in the past 13 years.
[Amyia Berry] My parents had recently had got a divorce. I would have like bad thoughts and would end up actually here in Cincinnati Children's a lot. So that's when they decided that it would be better for me to go to the foster care system.
[Judith W. Dexheimer] So there are about 470,000 children in foster care across the United States. And of kids in foster care, they have disjointed medical care, and when they change placements or change to a new foster family, they frequently change and potentially lose their medical records.
[Dunson] When your caseworkers drop you off, they don't give them the information that they need. They just let them know hey - got this child, she's a female, she's this age, and we'll be bringing her in. Do you have any beds open?
[Dexheimer] So I applied for an NLM grant because what the NLM is trying to do, with health disparities and health disparities research, fits directly into what we want to do with our care.
Our goal was to start with the kids who are 18 and over who are eligible for, or emancipating out of care, and help provide them with both their medical records and a portion of their data from job and family services - so from the people who have their actual custody.
So they could see their records, they could see their major diagnoses, their current medications, their immunizations. And then they could become stewards of their own data, but then they also had it in a form that they could take with them as they transitioned from pediatric to adult care.
[Dunson] One of the reasons I used Health Hero was to set up my appointment for my pregnancy. I did not remember all my testing that I had done because I never had like actual copy of my insurance card. So my insurance card was on there and they can scan it and put it through their system.
If you don't know your information by heart, it will be there for you to remember and it just like it helps. It shows you more information that you can learn outside of what people tell you.
[Dexheimer] One of the great things about doing the funding through the National Library of Medicine is the primary focus was - how to build an application with the end users involved in a novel way. How to get it out to them so that they could put it in their hands again and then how to evaluate whether or not they used it.
[Berry] A feature on Health Hero that was helpful to me was under immunization records. I was able to log in, look at my records, and print it out to get into nursing school. I grew up in the hospital and that made me want to become a nurse because I would become very close to the nurse. I would just like to take care of people for the rest of my life if I ever get the chance.
[Dunson] It's important for youth that's being emancipated to have Health Hero because of the fact that it's just something that you need to know. It's you're not going to always have someone there that remembers all your information. My advice, to a person that was going through what I went through, is you never give up. You don't let the foster care make you who you are. You always fight and you don't give up. You don't let the foster care define you. You don't let it break you.