Like most of us, it has been a long time since I attended a conference in person. Sessions are often not terribly memorable, and once I get home, I rarely refer to my notes.
One of the exceptions was a presentation I attended at the Annual Symposium of the American Medical Informatics Association a few years ago, where the topic covered the use of the patient portal among children and adolescents. I remember speakers talking about how their institution did the difficult job of defining which items could be shared, which ones should be shared, and how to best set various age and proxy restrictions to get the best result.
Fast forward, and now we are dealing with not only the limitations of patient privacy and EHR capabilities, but also the impact of interoperability and information lockout rules. JAMA Pediatrics had a good point of view article about this last week. Working with minor patients can be challenging, especially as they go through the teenage years and become candidates for certain health care services that can be kept confidential to some extent, such as pregnancy, sexual health, health mental and related attention. It has always been a fine line that we have had to walk, because although we may restrict that information in medical records, parents and guardians can still receive insurance bills and correspondence.
For those who might not be in the trenches of data sharing, the article provides a good overview of what HIPAA and HITECH have required in terms of making records available. It also summarizes the 21st Century Cures Law and the information blocking rules. When it comes to information blocking, there is a subset of situations where information blocking might be allowed, including technical infeasibility, harm prevention, and privacy. Those caring for minors may need to use one of these exceptions to protect patient confidentiality, especially since states have different requirements for protecting restricted categories of information such as mental / sexual health services and contraception.
Doctors need to understand those state rules and what parents might see, and they also need to fully understand what features their EHRs can provide to help them with this overwhelming task. Some EHRs I have worked with allow users to mark specific data items as “sensitive” and block publication; Others require the user to create separate encounter notes where documentation for an entire visit is blocked from posting. Less intelligent users may not understand these nuances, leading to negative consequences for patients, not to mention greater responsibility for themselves and their institutions.
The article also points out that the data flow should also protect the information provided by caregivers who might have the need to hide certain elements of the history from the patient, such as adoption status, genetic diseases, or other family history that a patient might not have. . ripe enough to absorb. Another tricky area noted by the authors is the maternal data found in the EHR table of a newborn. This information often includes sensitive tests (HIV, hepatitis, sexually transmitted infections), as well as information on the mother’s drug and alcohol use, detection of intimate partner violence, and more. Disclosing a mother’s protected health information to other caregivers can be a problem if not handled carefully.
The article mentions the benefits of information sharing and got me thinking about some of those aspects of the AMIA presentation. When I was in a traditional family medicine practice, we often spent the majority of the 17-year wellness visit discussing “Basic Adult Healthcare” so that patients could understand their health information and how to best access it while being headed to college or otherwise. in adulthood. With the rise of patient portals, teen patients can schedule their own visits, request refills, and more. Education is needed for them to understand the difference between urgent messages, non-urgent needs, and the best ways to navigate our often chaotic healthcare system.
For teens with complex medical histories who have the ability to participate in self-management programs, having access to your information can be valuable and can help them achieve the best results. Patients can partner with their parents for co-management, but organizations must take care that common policies (such as reducing parental access to medical records during adolescence) do not inadvertently hamper successful family dynamics. It’s a tightrope that care teams sometimes walk and I thought the article was a good reminder for the rest of us. Unfortunately, since it was featured in a journal specializing in pediatrics, I’m not sure how much outside visibility it will get.
The piece went very well with another article The one I came across, this one about using artificial intelligence systems to classify electronic health records. The study looked at the amount of time physicians spent reviewing clinical data during patient visits and whether an AI system could help organize patient information prior to review. The study was small, with only 12 gastroenterologists participating. Each participant received two medical records, one in standard format and the other optimized by AI. They were then asked to search the registry to try to answer more than 20 clinical questions. The AI-optimized records allowed clinicians to answer clinical questions faster and with equivalent precision. Almost all physicians stated that they preferred optimized over standard records.
Although the study was small and really needs to be redone with a larger number of multi-specialty physicians and multiple samples per physician, it got me thinking. What if you could use AI optimization to tackle the problem of pediatric data sharing? What if AI could be used to increase the efforts of clinicians to properly search and label or restrict confidential information? Could AI-enabled tools run in the background while doctors are documenting and alerting them to state laws about the information they are adding to the chart, and doing it directly at the point of documentation? What if our systems could really allow us to work smarter and help make it easier to do the right thing most of the time? I think that is the goal that most of us have in clinical informatics, although it is often difficult to offer those benefits to our users.
For those of you in the trenches of pediatric informatics, how well are the tools available to you? Do they make it easier to manage the exchange of information or more difficult? Leave a comment or email me.
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