I already know my blood type, what conditions and allergies I have, and when my last appointment was. And I don’t know what to do with the millilitre-by-millilitre values from my last blood workup. It’s important information for my doctor, but it’s not material to my day-to-day health.
Nevertheless it’s front and center in my provider and insurance-company patient portals. Besides a couple of critically useful tools—like appointment scheduling—they’re little more than a window to a database full of indecipherable medical data, generic health tips, and insurance minutiae. Who are patient portals really for?
As a user experience designer who works on consumer-oriented healthcare technology at Iodine, I find it remarkable that the industry pushes us so hard to use these patient portals, since they offer so little of value to meeting our health needs. With more portals launching every week, and an estimated $900 million spent on them annually by 2017, more and more “patients” will be asking themselves the question, “What am I supposed to do with this?”
“Who’s our user, and what do they need?” It’s a central question of design, and underpins the creation of any successful service or tool. Yet patient portals usually seem deaf to this basic consideration. After all, patients have lab values, but people care about what those lab values mean . Today’s patient portals pivot around the material relevant to the healthcare system—the medical record—instead of activities that are closer to people’s health needs.
Patient portals make sense as glorified interfaces to look at patient electronic health records—if they’re only seen as a way to satisfy Meaningful Use stages 1 and 2. But what if they were designed to satisfy the needs of real people, not an imaginary “patient” whose role is perfunctory interaction with administrative functions of the healthcare system?
Well, then they might be designed from the start to involve people with the goals of improving care coordination and delivery. They might be—or provide—tools to enable evidence-based self-management and decision making.
Patient (how medicine sees the sick) vs. person (how we see our lives and health)
Let’s start with the moniker patient portal. The health-record orientation naturally stems from considering the user audience as patients. But people are only patients in the context of an episode of medical care. The design transformation begins with ceasing to define people as patients (except when absolutely necessary) and abandoning the name “patient portal” itself. A slice of high value activities does have to do with people being in a patient role: When they book an appointment, want a referral, or need to send their medical record to another clinic. As long as the “patient” and “her data” are central, design will miss an opportunity to address health in the broader context of people’s real lives.
In 2013, the Blue Button team at the Veteran’s Administration unveiled the results of their Health Design Challenge, a call to designers to “reimagine the patient health record.” The contest produced dozens of admirable designs. They’re clever, and some quite beautiful. Ultimately, almost all are makeovers, not re-imaginations. They were largely attempts to better visualize and dress up lab reports, and other “medical record” data (inspired in part, ahem, by my colleague Thomas Goetz).
A truly human-centered portal should demote health data itself, and promote actions that take the data into account.
A different orientation: change, summary, and action
Between visits, all that really matters to most people is what’s new and whether they have to do anything about it. Getting closer to the “patient’s” needs starts with recognizing that the best next step is not having to worry anymore. Or, if it’s to come in to discuss a particular lab value that changed, perhaps that and nothing more. A great portal might boil down what it presents to just what’s next. Following the principle of progressive disclosure—where information is revealed to the user only as they need and ask for it—the most salient and actionable information would be trumpeted, and subordinate data (like lab values themselves) would remain available but hidden. Highlighting changes, summarizing, and providing next actions—like “everything’s normal but book an appointment to come in and discuss this one thing,” or “book an appointment to re-test in a month”—do more to satisfy than pretty visualizations of all the data.
Structured follow-up, and executing on care plans
Today’s portals are one-way chutes, designed to regurgitate the structured data of medical history. But they’d be more powerful if people could use them to provide structured data back to their care team, in a way that complemented the evaluation of their progress. If only it were as natural to supply feedback as it is to book an appointment online! Instantly though, the premise of the portal—a by-now ancient term for a Web site—is undermined.
To become a service for structured follow-up—taking advantage of the time between doctor’s appointments—the portal has to become more than a website people log into. Instead, it could be reimagined as an interface between someone’s health record and their life. It would provide services—distributed across devices and time—that elicit structured feedback about how things are going, or ways to share experience from “real life” that can impact care.
As it stands, third party startups are stepping in to fill the void, with telemedicine, online consultation, symptom-tracking apps, and so forth—all services that would best feed back into the health record in a meaningful way.
With structured feedback into the health record, there’s an opportunity to facilitate a kind of self-management that hasn’t been possible. In much the same way that lab test values injected into the portal can be contextualized in a patient’s complete history and used in clinical decision-making, this self-reported structured data or from-home records could be integrated into personalized, living evidence-based tools that go far beyond the generic health assessments of today’s portals.
It’s easy to be armchair critic, and I want to acknowledge the hard work that went into satisfying Meaningful Use by way of patient portals. For many Americans, it has become easier to get health records from one clinic to another, and to take care of some routine interactions with the medical system. But it’s obvious that medical records themselves are not the true picture of a person’s health. As long as patient portals are focused on those records, they’ll come up short as tools to improve health.
Adam Baker is head of product design at Iodine
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