by guest author Carolyn Jasik, MD
A major ambition of health care informatics is to enable patients to be more engaged in their own care. One avenue to give them online access to their electronic health record. At UCSF, our adult patients have had access to their EHR using UCSF MyChart since April 2011. Parents can also use MyChart to access the health records of their children aged 11 and under.
Access to the EHR of a minor age 12 through 17 gets more complicated. I’ve invited a member of our informatics leadership team, Dr. Carolyn Jasik, to post about these issues and describe UCSF’s solution that goes live today. Dr Jasik is an Assistant Professor of Pediatrics specializing in adolescent health behavior change. She publishes in preventive health and confidential care for teens, and led the development of inpatient pediatric provider content for our EHR. Dr Jasik has been the driving force for UCSF’s Teen Patient Portal. – RC
Starting this morning, teens who receive primary care at UCSF can sign up for private access to their electronic health record through UCSF’s patient portal, based on Epic’s MyChart. This is a remarkable achievement for an institution that is still adjusting to the changes in daily work throughout the hospital after our Epic inpatient “big bang” 7 months ago. As institutions across the country race to implement EHRs to take advantage of federal incentives such as Meaningful Use, innovative features often take a back burner to keeping the lights on.
In California, and many states across the country, a teen can consent for confidential medical care for certain medical needs such as contraception, testing for sexually transmitted diseases, and pregnancy care. This means that, under the law, their parent cannot have access to these records. Traditional patient portal implementations for pediatrics have parent-only access, where the parent sees the child-patient’s entire record. However, because of the legal requirements for confidential care of teens, most healthcare providers either severely limit parents’ access when their child reaches adolescence, or they turn off the portal completely. Only a few institutions have allowed teens access, but usually this access is limited to messaging only. These limited versions still meet meaningful use requirements, but they deny teens and their parents access to the full potential of the EHR. This is in conflict with recommendations by both the American Academy of Pediatrics and the Society for Adolescent Health and Medicine about the importance of the EHR advancing adolescent health.
At UCSF, our patient portal now allows the teen and parent to have separate access to messaging, lab results, diagnostic imaging results, appointment requests, and immunizations, but only the teen can see medications, request refills, appointments, and their health summary. The separate access is to protect the privacy of adolescent confidential care as required under California law. We look forward to leveraging our teen portal for educating teens about their chronic disease, improving our no show rates (highest in our teen patients), and assisting them in their transition to adult care. So how did we make it happen? The real answer is it just makes sense when you consider the clientele. But the back story is a combination of a geography lesson, federal incentives, passion, and timing.
The MyChart configuration started with standard proxy settings, plus a little custom build. The table below summarizes the patient portal functions available by user.
|Messaging to and from provider*||YES||YES||YES|
* Parent and teen can send private messages to the provider.
The teen and parent lab view is shared, but we withhold certain lab results, such as pregnancy testing, OB ultrasound, and a few others, from displaying for patients ages 12 to 17. We allow parents to send appointment requests, but not to view current appointments. We investigated defaulting only one recipient (the adolescent) for messages from the provider to the patient, but this was not possible due to limitations of the software. Finally, we turned off online appointment requests for clinics that provide exclusively confidential care for teens, since the appointment request field is shared between patient and parent and includes the clinic name.
Perhaps the most important step was extensive provider training – including in-services, webinars, and email notifications – on how to properly send messages to patients and parents. We also completed an extensive internal review with our legal, privacy, and risk management departments to make sure we identified all potential areas of risk for violation of confidentiality. The Adolescent MyChart build at UCSF would not have been possible without the expertise of our lead portal analyst, Kathy Lehto, project manager Alisa Armstrong, and Sacheen Drucker and Deborah Yano-Fong from our Privacy Office.
Teens are pros at sharing and receiving information virtually. Any parent of a teen knows that sharing personal information via text or Facebook is, for a teen, on par with an in-person conversation. So why not also virtually connect with their medical provider? To provide patient-centered care for adolescents, we will need to be more flexible in how we interact with them. In addition, their health status is linked to decisions, behaviors, and environmental influences that occur way beyond the clinic walls. To extend our reach only strengthens our ability to improve health.
We made the decision to give teens their own access, and to make them able to see their full record, because we think it’s the right thing to do and it’s where we see patient-centered health information technology going. Our teen patients are already thriving in a rapidly changing virtual landscape. As we envision a future with these kids as our adult patients, we don’t want them to be left behind. Stay tuned, we are just getting started.
If you are a parent or teen and want access to the UCSF Adolescent MyChart, please contact your provider’s office for details.