How future patient portals should be designed to support hospital patients
This post summarizes a paper published with colleagues Sonali R. Mishra, Maher Khelifi, Ari H Pollack, and Wanda Pratt in May 2019 at the ACM Conference on Human Factors in Computing Systems (CHI). You can read the entire paper here.
When was the last time you logged in to your patient portal?
Your patient portal is where your medical history lives: test results, medication lists, bills, appointments, messages with providers, and other details about your healthcare. If you‘re in the United States, you might have been given patient portal access through your doctor’s office or health insurance company.
Thanks to government incentives, patient portals have become commonplace over the last decade, and have shown promise in helping patients coordinate, manage, and engage in their healthcare. Over time, patient portals have become available not just for primary care, but for hospital care too.
Unfortunately, researchers have been noticing problems with patient portals in the hospital. Adoption and uptake among patients is slower than expected. There are racial and age disparities in their use. Several usability and design issues have been uncovered.
So how do we overcome these challenges and design patient portals that are useful and valuable for patients in the hospital?
What We Did
To answer this question, our research team interviewed 30 patients, and family members of patients, about how they envisioned using a patient portal during their hospital stay. Our goal was to learn how their hospital experiences informed their needs, preferences, and values related to using a patient portal during their stay.
What We Learned
Our participants shared several needs they have that current patient portals are not fulfilling.
For example, patient portals could do a better job of easing the transition from home to hospital. Simple things like providing a map of the hospital and sharing details about amenities for longer-term stays (e.g., laundry rooms) could go a long way towards making patients feel cared for. Others wanted a space to share their care preferences — such as preferred bedtimes and favorite foods — so their providers could get to know them as people, rather than patients.
Because patients have unpredictable schedules in the hospital, patient portals could give them more control over how they spend their downtime. A few participants wanted to block off uninterrupted time for sleeping or hosting visitors. Some patients needed alerts of changes to their schedule so they could prepare questions and be ready for treatment.
Patients also struggle with getting information about the why behind care decisions their providers make. A patient portal should provide more opportunities to understand and remember hospital care. Information about what to expect from an upcoming procedure, its risks or benefits to their health, definitions of medical jargon, and access to the latest research about their treatment were just a few examples mentioned. Patients also wished they could “replay” audio of their care conversations, and wanted a place to store drawings or notes that providers usually sketched on scrap pieces of paper. “Sometimes you lose those papers that get handed to you, even though you try not to,” a parent of a pediatric patient told us. “So having an app that you can revisit would be very helpful.”
Patients in the hospital are often managed by care teams, made up of a variety of nurses, doctors, surgeons, specialists, consults…the longer the list, the harder it is to remember each person’s name, face, and role. Patient portals could identify which care team member is best equipped to answer their questions. Knowing who they should ask, and being able to say how urgent their question is, is one time-saving way to fix communication breakdowns.
Aside from their care team, our participants thought patient portals should help them collaborate with their caregivers. Caregivers — the friends and family who support the patient in the hospital — often have a huge role in advocating for their patient and communicating with the care team, but there currently isn’t an easy way to share updates with them unless they are present with the patient in the hospital room.
Finally, our participants wanted patient portals to prepare them for leaving the hospital. For example, patients often have to meet goals, like drinking 1 cup of water an hour or walking 3 times a day, before they can leave the hospital. But discussions about what these goals should be, and how the patient is progressing toward these goals, aren’t well documented — a big problem when the patient’s and provider’s opinions about these goals differ.
What This Means for Patient Portal Design
Hospital patients want their portals to do so much more than provide access to their test results and list their medications. Instead of making provider-facing Electronic Health Records more patient-friendly, it’s time to recognize that patient portals need to serve a broader purpose in the hospital, and we should design them accordingly.
Design for Goals, not Problems
Our participants’ mention of goals supports a recent shift in medicine toward promoting a goal-based, rather than disease-based, healthcare model. Why not let patient portals reflect this shift too? Let’s create a place where patients can document and track their care goals alongside their providers’ goals, so they can be compared, discussed, and revised when needed.
Design for Dynamic Hospital Care
Hospital care is inherently uncertain. It’s difficult to know what symptoms mean, if medications are working, what tests will help reach a diagnosis, and when the patient will start getting better. Patient portals could keep patients (and caregivers) in the loop by sharing real-time updates about their care progress. Features that answer common questions like “is my test result back yet?” or “where is the pain medication I requested?” could not only help patients stay informed, but help them intervene if they notice a mistake or breakdown in their care.
Design for Situational Impairments
Patients in the hospital experience situational impairments, which include cognitive challenges (due to medications or treatment side effects) and physical challenges (not being able to get out of bed, lots of tubes or wires that restrict movement). Situational impairments make using technologies very burdensome for end-users. Going forward, patient portals could let patients record conversations with providers (a common practice in other healthcare settings) or offer multi-media care explanations — like interactive videos — to reduce the burdens of situational impairments for hospital patients.
Patients face a lot of uncertainty and disempowerment in the hospital. By addressing these challenges through patient portal design, we can help them feel more empowered and in control of their hospital care.
