by Mary Butler
In this web series, HIM professionals working in emerging roles give advice on tackling difficult HIM problems. This month features the conclusion to a two-part series discussing the unique challenges HIM professionals face in deploying EHRs customized to serve pediatric and adolescent providers.
The HIM Problem
Electronic health record (EHRs) functionalities such as problem lists and patient portals often are not able to meet the confidentiality needs of adolescent patients.
The HIM Problem-Solver
Anne Tegen, MHA, RHIA, director of HIM, Children’s Hospitals and Clinics of Minnesota.
Protecting Teen Privacy with Portals
There is a great deal of debate swirling in adolescent health circles about how sensitive information should be treated in the health record as providers switch from paper records to digital solutions. One of the reasons this debate is happening now is that the “meaningful use” EHR Incentive Program calls for patient portals.
The tricky part for pediatric providers is establishing the age at which parents and caregivers can be cut off from access to the portal. For instance, should the provider abide by the legal definition of adulthood, at 18? Or do they make the cut-off age 13, which is when adolescents tend to become more reticent to discuss private health matters with their parents?
Some organizations have gone with the younger cutoff, but give the patient the ability to proxy their parents access to the portal with written permission.
Tegen explains that many teens between the ages of 12 and 14 have nothing to hide from their parents, so allowing them access isn’t an issue, especially if they’ve been helping to manage a chronic condition or illness for a long time.
“But there’s another huge population of adolescents who do not want their parents to know [what’s in the record],” Tegen says.
She notes that once a child turns 12 or 13, nurses and physicians often ask parents to leave an exam room so they can ask the teen about more private matters, such as questions related to sexuality, gender identity, drug or alcohol use, sexual activity, abuse and neglect, bullying, or problems at school. All of this information is fair game for an electronic record note, but Tegen says many EHRs aren’t designed to segregate information in the same encounter.
“So in the paper world it was easy, you just pick up a pink form to write that information on it,” Tegen says. “And when you went to release the record, and the parent asks for it, you wouldn’t give them the pink form, you’d just give them everything else. They have a right to have it because their adolescent isn’t considered legally an adult… it’s become very difficult to identify how to separate out that information without causing the physician to do more work.”
While the providers and HIM professionals wait for vendors to help figure some of these issues out, Tegen and her team have decided on some processes that don’t involve portals and EHRs.
First, physicians, nurses, and other clinical staff work with teens to make them more comfortable with having difficult discussions with their parents. For patients under 18, the take the tack of “I can keep this information confidential but only so far.”
Tegen’s organization has also adopted a process for when a parent requests a release of information (ROI) about sensitive medical information about their child. When these requests come in, the ROI staff member calls the hospital’s adolescent clinic and a gynecologist who calls the patient directly first.
But for cases where a patient is being abused by a parent, sibling, a friend, or any other inappropriate adult, Tegen’s organization created a separate document/form that only the physician, patient, and HIM professional knows about. Before it can be released to a parent, the patient and the physician must agree to do so together. In many cases, if the parent is perpetrating the abuse, they are keen to know what’s been documented. If this is the case, the parent can have access to records only when the child is safe and being treated for and protected from further abuse.
“I know some hospitals that still maintain that information in paper because they can sequester it in a file,” Tegen says. “The record will let you know there’s a separate file. But that’s dangerous from my perspective, because how do you get access to that information when you really do need it?”
For extra security Tegen prefers “break the glass” technologies—which are often used to protect EHRs for VIPs—for these kinds of records. This ensures that if someone tries to electronically access a young patient’s record, they will receive multiple warnings, and an EHR security team will be notified.
Documenting Sexual Orientation
Tegen says meaningful use dictates that SNOMED codes be used on the problem list portion of an EHR, but there’s not a SNOMED code for everything. This is a particular concern when it comes to documenting a teenage patient’s gender identity and sexual orientation. Tegen says pediatricians want this information documented very clearly because teenagers who are lesbian, gay, bisexual, or transgender (LGBT) have a higher risk of suicide. In other cases, LGBT teens could be facing abuse or estrangement from their parents.
“We see that played out in society all the time and it’s a problem we want to put in there so the whole care team knew there’s an issue. You can go into the record and read about it and be aware,” Tegen says.
Having information about a patient’s sexual orientation is critically important because it influences even the most basic interactions, such as how a doctor greets a patient and how they inquire about romantic relationships—a question that is standard for teens.
“In talking to a lesbian, you don’t talk to her about her boyfriend. You say ‘If you’re in a relationship, tell me about your girlfriend.’ And it’s just having that sensitivity with patients from a developmental standpoint. [They might be] having a really difficult time with societal issues,” Tegen says.
She adds that there is a lot of room for improvement in the way vendors handle adolescent confidentiality in patient portals and EHRs. Fixing these shortcomings will also help to further the growth of health information exchange.
“To be able to share information and protect the patient’s confidentiality is a real challenge. I’m hoping we see some progress from the vendors and leadership from them,” Tegen concludes.