As a physician, I use the electronic health record (EHR) to educate patients and empower them to make knowledgeable decisions about their care. However, as a daughter of elderly parents with complex medical conditions, the EHR takes on a more personal meaning – it’s my lifeline to their care team, and it enables me to coordinate their health care needs.
There’s a term for those of us in our 30s to 40s who are raising children while caring for elderly parents: the Sandwich Generation. As this generation grows, so does a unique subgroup of “long-distance” caregivers – those of us juggling medical decision making remotely. For me, the EHR and, more specifically, the patient portal allows me to fulfill this critically important role in my parents’ lives – from 2000 miles away.
Via the patient portal, I can order, pay for and arrange home delivery of their medications. I can communicate every six weeks with their geriatric pharmacist about the impact of tweaks in their medication management. I can schedule three-way phone or even video conferences with my dad and his geriatrician.
The patient portal enables me to communicate, advocate, and facilitate on behalf of my parents. More importantly, I’m made to feel my engagement on the portal is positive, and that feeling promotes trust – my trust in their care team, the care team’s trust in me as their partner, and also my parents’ trust and confidence knowing we’re all working together.
That being said, technologies such as patient portals and EHRs can be far from perfect. On my parents’ portal, a change to the pharmacy interface left me struggling to refill medications for nearly a half hour, which was worsened by the lack of a tech support option. A search for their annual residential care facility form unhelpfully generated hundreds of unrelated results, and still didn’t provide a way to submit it online to medical records. And then there are small things, such as that I can only know what their physician looks like; the rest of their care team (and my parents) don’t have the ability to upload their headshots. That might seem trivial, but putting a face to the pharmacist I speak to every six weeks would make me feel more connected to the team.
For patient portals to facilitate real meaningful use, they must evolve to meet the needs of patients and their families. Technical support such as a live chat feature, as well as advance notice of layout or functionality changes, can help alleviate user frustration.
Ongoing end-user input from patients and caregivers is critical – both in the form of real-time feedback about the user experience and through dedicated organizational engagement with patient and family advisory council representatives to seek their perspectives on the use of technologies such as EHRs. By developing platforms that are grounded in the patient and family experience, we can make real strides toward improving engagement, trust and the overall experience of care.
Lollita Alkureishi is a board-certified pediatrician with UChicago Medicine and Associate Professor in Academic Pediatrics at the University of Chicago & Clerkship Director at the Pritzker School of Medicine. Her goal is to provide continuity of care and preventive health care services for medically underserved youth. She was among eight winners of the ABIM Foundation’s Trust Practice Challenge in 2019.