UCSF Goes Live with Teen Patient Portal

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.

Guest blogger Dr Carolyn Jasik, Assistant Professor of Pediatrics at UCSF

Guest blogger Dr Carolyn Jasik, Assistant Professor of Pediatrics at UCSF

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.

Content Parent Proxy
0-11 yrs
Parent Proxy
12-17 yrs
Adolescent
12-17 yrs
Labs YES SELECTED SELECTED
Immunizations YES YES YES
Allergies YES YES YES
Growth Chart YES YES YES
Messaging to and from provider* YES YES YES
Appointment Request YES YES YES
Appointment View YES NO YES
Problem List/Summary YES NO YES
Medications/refill request YES NO 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.

UCSF Launches Electronic Exchange of Health Information

On September 1st UCSF Medical Center turned on electronic health information exchange with our Epic electronic health record. It’s an important step forward and one of the features of electronic health records I’m most enthusiastic about. It has the power to improve health not just at our own institution but wherever our patients go. We had hoped to enable this as part of our June 2nd inpatient big-bang go-live, but decided to wait 90 days to make sure some final details were fully hammered out.

Epic has two levels of electronic health information exchange, “CareEverywhere” for exchanging information between Epic customers, and “CareElsewhere” for more limited exchange with a non-Epic EHR. For now we’ve turned on CareEverywhere, connecting us with participating northern California providers like UC DavisStanford, and Palo Alto Medical Foundation, although there’s no geographic limit within the United States for where records can be shared. (With their particular sense of humor, Epic presented this week at their annual meeting on the future “Intergalactic” sharing of health records, emphasizing the point with photos of the Curiosity Rover and The Netherlands)  Our first exchange was at 10am on the 1st when we electronically received records for an ill youth hospitalized at UCSF who had previously received care at Stanford, and we had a dozen exchanges in the first 7 days.

Like always, we only share health information between institutions after getting written permission from our patient.  The large majority of patients want their health information shared electronically with other physicians and hospitals when we need it to provide safe and appropriate care, as long as we are sharing securely. In my experience, my patients are surprised to learn even major hospitals have largely remained isolated islands of information. When I collect permission from a patient to obtain their records from a hospital across town, patients are usually surprised and discomforted to learn I didn’t have access to it already.  Health care is far behind other industries in this kind of information integration, and fixing this in a hurry is a centerpiece of the federal government’s standards for health IT implementation.

For the last few decades health records have been shared primarily by telephone and fax. We call the primary physician’s office (for example) and if we actually reach the physician immediately, we usually get their best recollection of the patient off the top of their head, followed by more complete information by fax hours or days later if at all. If the patient was recently hospitalized, getting that hospital record requires work from that hospital’s medical records department, seldom a 24/7 operation, and it arrives as a thick, grainy, often disordered, fax-of-a-copy-of-a-scan of the original record. This helps, but the information has to be manually transcribed in to our own record, which is only as accurate and complete as any 10-fingered process.

With electronic health information exchange, sharing patient records is more secure and more accurate. The electronic point-to-point connection between institutions is encrypted and the identity of the patient is confirmed electronically between the EHRs. The patient’s health information arrives immediately in our EHR instead of on the tray of a fax machine some unknown number of hours later.  A physician on our receiving end reads and validates the electronically exchanged information before incorporating it in to our own record. The exchange is at the level of data instead of pieces of paper, and so discrete information like medication lists, drug allergies, problem lists, and other pieces of history can be synchronized between the institutions.

Unfortunately we’re still not able to exchange information with San Francisco General Hospital or Kaiser Northern California, two providers with whom we share many patients.  Kaiser Northern California has been on Epic for years, but does not to participate in electronic health information exchange. San Francisco General is moving fast on implementing its own electronic health record, and we look forward to connecting with them when the capability on both sides is ready.