Joyce Lee MD MPH brings design thinking to academic medicine, and is making a difference in the lives of patients and clinicians by bringing them together in a learning health system.
Joyce is a pediatric endocrinologist on the faculty at the University of Michigan. As a clinical and health services researcher, she is very interested in the notion that human-centered design and design thinking — combined with emerging technologies such as mobile technology, data visualization, and social media — can transform the research enterprise and the delivery of clinical care. Much of her work is focused on the confluence of all of these streams in the creation of learning health systems. You can find her on line at doctorasdesigner.com and on Twitter: @joyclee.
When we spoke, Joyce brought together streams of participatory medicine, design thinking and the notion of a learning health system, emphasizing that the system – and many elements of the system – must be designed, or redesigned, with a focus on the system of users of any tool or process. This means bringing patients, caregivers, clinicians, and others to the table and engaging them in design.
Joyce defines design thinking as “a form of problem solving that is participatory in nature, engaging people who are going to be using the product.” She notes that the the design process works best when it is iterative and participatory. It has to be participatory because otherwise it is difficult to know whether a designer working in isolation is even asking the right question, or solving the right problem. Empathy, listening, taking time to engage are important parts of the process.
At the University of Michigan, Joyce is involved in a collaborative called Health Design By Us, involving technologists, designers, clinicians and patients. As an example of what this process can yield, Joyce described how, by listening to a teenage patient with Type 1 diabetes describe the stress she experienced texting back and forth with her parents all day while at school about her blood glucose levels, the team (including the patient) determined that a good solution would be to have a set of “emoji” symbols that could communicate simply here current state, stripping away much of the stress created by fraught communications with her parents. The team created Diabetes Emoji, which worked well for the patient and are now available in the “sticker store” for iMessage.
As this example demonstrates, the issue is not simply a user experience issue; it’s a deeper issue involving the emotional side of dealing with chronic disease, the burden it places on relationships with families. “The lived experience is important – not just the clinician visit.”
From Joyce’s perspective, clinicians, diabetes educators, researchers – everyone in the healthcare system – should be thinking about design and should be trained in design thinking.
She is currently working on redesigning the clinician experience in Epic in connection with a certain set of patient encounters in diabetes management, using principles of user-centered design in order to make the clinician workflow easier on the clinicians. After the University of Michigan transitioned to the Epic electronic health record system, it became clear to Joyce that the EHR is not optimally designed. She became an “Epic physician builder” in order to be able to better work on optimizing tools and building her own tools for the clinic, including, for example, questionnaires for patients to answer in clinic using tablets, with “structured fields we use as clinicians to do our work and to measure outcomes,” and clinician tools for various types of encounters.
Joyce notes: “We’ve come a long way. Before we had EHRs we couldn’t even tell you how many patients we had” without counting the paper charts in our files. But the initial version of the EHR didn’t serve here department fully – they were scanning in paper questionnaires, and didn’t have structured data to work with; it wasn’t captured in a meaningful way, wasn’t actionable, couldn’t be used to help patients at scale.
Ever the pragmatist, Joyce notes: “One of the things I’ve learned as a designer is that it always takes way longer that you think and it’s always much harder than you think it will be.” Also: “One of the things I’ve learned in health IT is that if something can go wrong, it will.”
While this means that it is necessary to build in more cycles, to allow more time for development and implementation, Joyce and her colleagues are excited about being able to improve things for many patients, many clinicians, in multiple sites, across childhood obesity and diabetes.
Working in academic medicine comes with its own special set of challenges and opportunities. From the perspective of trying to build a learning health system, a key challenge is the way in which patient care, quality improvement and research are siloed. The institutional inertia is sometimes great, and building a virtuous cycle of communication across traditional solos in academic medicine is often met with some resistance. Joyce does believe that progress is being made towards a more optimal system design that will allow for greater impact on improving population health at scale, utilizing the tools at hand, including the EHR.
We discussed the resource challenges inherent in the current state of the healthcare system, and talked about the potential advantages held by systems that are further along the spectrum of integration and value-based care. Within healthcare systems the “last mile” – even in a value-based care situation – is often fee-for-service; I believe that this must change in order for the predicted benefits of a shift to value-based care to be realized more broadly.
Joyce is involved in the maker movement, so we spoke about that for a bit as well – particularly as it is found in the diabetes community. First, Joyce put it in perspective, on a continuum including professional design (conducted without contact with end users), human-centered design (professional designers getting feedback from end users), participatory design (“let’s design together” with stakeholders), and the maker movement (a DIY approach). As Joyce notes, if you design a system where you assume that everyone involved is a designer, it is likely to be more successful.
The Nightscout project began when the father of a four-year-old with diabetes hacked into his child’s continuous glucose monitor to get remote access (i.e., to get readings on his smartwatch). There are now tens of thousands of members of the Facebook group, “CGM in the Cloud,” and the maker movement in diabetes has moved beyond monitoring to the artificial pancreas as well. As Joyce says, it’s “provocative, interesting, compelling,” and completely patient-driven and patient-designed, like a “home brew club.”
Joyce says that we need to embrace the maker movement because this is a model of how we should be redesigning diabetes care, “a model for identifying and elevating patient expertise and achieving outcomes we all want but are not achieving with the current model.” The University of Michigan has PCORI funding to do research engagement with teens with Type 1 diabetes, and Joyce and others are currently designing the curriculum to be used in upcoming courses with teens – training them to be research advisors. They’ll be programming their own data into arduinos and wearables. It’s a model for introducing younger people to the maker movement and helping them to achieve their full potential.
When I asked Joyce what she would hope to see in a healthcare system of the future, she articulated a clear vision: She would love for the learning health system to become the standard; she wants the healthcare system to be more participatory in the way that it designs care, to engage more patients and caregivers. She also issued a clear challenge: The diabetes clinic should be a maker space.
Joyce asks: “Why isn’t health more peer to peer? Why isn’t health about iterative learning? Why isn’t health about trying new things, failing and then trying again? That’s what designers and the maker movement teach us. To the extent that we can introduce that kind of culture into healthcare – that to me would be utopia.”
I spoke with Joyce as part of my ongoing series of fireside chats with healthcare innovation leaders – Harlow on Healthcare, on HealthcareNOW Radio. Listen to our radio station online, or ask your smart speaker (Amazon Echo or Google Home): “Find Tune In station HealthcareNOW Radio.” You can catch me live weekdays at 8:30 am, 4:30 pm and 12:30 am ET. As each new show goes live, the last one joins the archive, available via SoundCloud or your favorite podcast app (iTunes, Stitcher, iHeartRadio). Your comments are welcome here. Join the conversation on Twitter at #HarlowOnHC.