Like most of us, it’s been a long time since I’ve attended an in-person conference. Often, the sessions aren’t terribly memorable, and once I get home, I rarely consult my notes.
One of the exceptions was a presentation I attended at the American Medical Informatics Association Annual Symposium some years ago, where the topic covered patient portal use among children and adolescents. I remember the speakers talking about how their institution did the difficult work of defining what elements could be shared, which should be shared, and how to best set up various age and proxy restrictions for the best outcome.
Fast forward, and now we’re dealing with not only the limitations of patient privacy and EHR capabilities, but the impact of interoperability and information blocking rules. JAMA Pediatrics had a good viewpoint article about this last week. Working with patients who are minors can be challenging, especially as they move through the adolescent years and become candidates for certain healthcare services that can be kept confidential to some degree, such as pregnancy, sexual health, mental health, and related care. It’s always been a fine line that we’ve had to walk, because although we can restrict that information in the medical records, parents and guardians may still receive the bills and insurance correspondence.
For those who might not be in the data-sharing trenches, the article provides a nice overview of what HIPAA and HITECH have required as far as making records available. It also summarizes the 21st Century Cures Act and information blocking rules. As far as information blocking goes, there is a subset of situations where information blocking might be allowable, including technical infeasibility, preventing harm, and privacy. Those caring for minors might need to use one of these exceptions to protect patient confidentiality, especially considering that states have differing requirements as far as protecting restricted categories of information such as mental / sexual health services and contraception.
Clinicians have to understand those state rules and what parents might be able to see, and they also need to fully understand what features their EHRs might provide to help them with this daunting task. Some EHRs I’ve worked with allow users to mark specific data elements as “sensitive” and block release; others require the user to create separate encounter notes where an entire visit’s documentation is blocked from release. Less-savvy users might not understand these nuances, leading to negative consequences for patients, not to mention increased liability for themselves and their institutions.
The article also notes that the flow of data must also protect information provided by caregivers who might have a need to keep certain history elements from the patient, such as adoption status, genetic diseases, or other pieces of family history that a patient might not be mature enough to absorb. Another tricky area noted by the authors is the maternal data that is contained in a newborn’s EHR chart. This information often includes sensitive testing (HIV, hepatitis, sexually transmitted infections) as well as information on maternal drug and alcohol use, intimate partner violence screening, and more. Disclosing the mother’s protected health information to other caregivers can be a problem if not handled carefully.
The article mentions benefits of information sharing and jogged my mind on some of those aspects from the AMIA presentation. When I was in a traditional family medicine practice, we often spent the majority of the 17-year-old well visit discussing “Healthcare Adulting 101” so patients could understand their health information and how to best access it as they headed to college or otherwise into adulthood. With the rise of patient portals, adolescent patients may be able to schedule their own visits, request refills, and more. Education is needed so they understand the difference between urgent messages, non-urgent needs, and the best ways to navigate our often-chaotic healthcare system.
For adolescents with complex medical histories who have the ability to participate in self-management programs, having access to their information can be valuable and can help them get the best outcomes. Patients can partner with their parents for co-management, but organizations must be careful that common policies (such as reducing parental access to the chart during the teenage years) do not inadvertently hamper successful family dynamics. It’s quite a tightrope that that care teams walk at times and I thought the article was a good reminder for the rest of us. Unfortunately, since it appeared in a pediatric-specific journal, I’m not sure how much external visibility it will get.
The piece paired nicely with another article that I ran across, this one about using artificial intelligence systems to sort through electronic health records. The study looked at the amount of time that clinicians spent reviewing clinical data during patient visits and whether an AI system could help organization patient information prior to review. The study was small, with only 12 gastroenterologists participating. Each participant received two clinical records, one in the standard format and one that had been optimized via AI. They were then required to search the record to try to answer more than 20 clinical questions. The AI-optimized records allowed physicians to answer the clinical questions faster with equivalent accuracy. Nearly all the physicians stated they preferred the optimized records to the standard.
Even though the study was small and really needs to be redone with a larger number of physicians across multiple specialties and with multiple samples per physician, it got me thinking. What if you could use AI optimization to tackle the pediatric data- sharing problem? What if AI could be used to augment clinician efforts to seek out and appropriately tag or restrict sensitive information? Could AI-enabled tools run in the background while physicians are documenting and alert them to state laws about the information they’re adding to the chart, and do so right at the point of documentation? What if our systems could actually allow us to work smarter and could help make it easier to do the right thing the majority of the time? I think that’s the goal that most of us have in clinical informatics, although it’s often difficult to deliver those advantages to our users.
For those of you in the pediatric informatics trenches, how well are the tools available to you doing? Are they making it easier to manage information sharing or more difficult? Leave a comment or email me.
Email Dr. Jayne.