Considering the troubled launch of the government’s online health insurance marketplace, it will take more than the promise of the internet to improve the nation’s healthcare system. It will also take smart design, says David Fore, executive director of Lybba, a nonprofit Los Angeles design firm focused on healthcare collaboration.
I spoke with Fore, who recently published a journal article on using design to improve chronic illness care, about new ways patients are working with physicians, how the techniques of interaction design improve health tools and the future of healthcare collaboration. Below are excerpts from our interview.
Lybba’s philosophy is “We design like your life depends on it.” What does that mean?
We’re at a time in the design industry and the healthcare industry where the two need to meet and work out a way to go forward. Healthcare in this country is encumbered by a business model that isn’t serving many people’s needs -- particularly given the amount of money we spend for these services. You’re looking for opportunities for change.
One of the main objectives of Lybba is to design as if your life depended on it. You should put into your work the same kind of energy you put into the well being of your family. That’s what the message means.
Lybba is working to make healthcare more collaborative through efforts such as mobile apps and portable medical records. Talk about why healthcare needs to be more collaborative.
The increasingly common use of the internet creates way too much information for any single doctor -- much less patient -- to take in. You see the rise of the expert patient. If they’re the sort of patient that has the motivation and capacity, they’ll deeply research their own condition and do comparative work. Increasingly, people are looking for ideas that can help with research and the exchange of information and the cultivation of new healthcare collaborations.
Healthcare is one of the holdout industries in terms of the radical transformation that the internet can create. Patients are using social media. They’re doing problem solving and tracking sophisticated self-experimentation. There’s this sort of authority gradient in healthcare that we’re all familiar with, whether we’re conscious of that or not. The nonprofessionals have access to essentially the same research as their professional counterparts and there’s an opportunity to bring people together. These kinds of opportunities await the healthcare industry.
Talk about some of the specific projects you’re working on around health.
One of the initiatives we’re undertaking now is a shared decisions support product. We’re working on this with a research hospital in Los Angeles. This is along the theme we’re focused on at Lybba: designing infrastructure at the cross-current of patients’ lives while improving research time. This shared decisions support system is meant to facilitate conversations that are often difficult for patients and their families. In this case, there’s a statistical model underneath the product that helps illustrate to both clinicians and patients the likelihood of complications depending on the choice you’re making. There are always tradeoffs in serious chronic illness care and this tool makes it possible for people to understand those risks and be able to make a choice that’s appropriate for them.
We’re also working on C3N [a collaborative chronic care network, currently focused on inflammatory bowel disease, that connects doctors, patients, families, researchers and other stakeholders] where we have a network with prototypes for serious chronic illness care. We want to correct the authority gradient, so patients who have a lot of knowledge can interact with clinicians and researchers. When you have a chronic illness you’ve been living with for a while, you begin to get serious about the patterns in your life. Self-tracking is one way to do this. But doctors are getting too much information from a small number of patients who are tracking a lot of data. Patients come in with concerns from the internet or they think they understand a pattern in their life, but they aren’t trained to. Our infrastructure helps bring together the clinical and patient world. If somebody is interested in seeing what effect probiotics will have on them, they’re able to -- in a sense -- co-author studies with their clinician. The clinician can help them track various kinds of symptoms or incidents in their lives.
These experiments can be applied over and over again. A physician could see what effect a probiotic has on a number of his patients. He can create a virtual patient cohort of folks testing out the effectiveness of probiotics. That clinician can share the template of that experiment with his community of clinicians, who can then modify it or take it as a whole. When you aggregate this data from people, you can start to see the pattern in cross section against other characteristics, such as age, time of diagnosis and genetics. That is the doorway to the notion of precision medicine, personalized medicine. Clinicians aren’t apt to do a series of experiments with each of their patients. If you can make the administration of that easier, if you can make the data available, there’s a huge opportunity there for reducing costs and improving quality at the same time.
One of the techniques you use at Lybba is interaction design. What is interaction design and why is it better than other design methods?
Interaction design is a blueprinting process. It’s about how you design and build something taking into account that fourth dimension: time. You include storytelling because it takes place over time. It’s just not any story. It’s the story of people that are most likely to use the product you’re designing. That requires research into the lives of people, and in this case the lives of people who have some illness or a doctor who is trying to improve the way he is providing care. The first step is this deep research. Then we synthesize that information into personas, fictional characters. When you’re working in software it’s easy for the engineering mindset to prevail. What an interaction designer does is situate the people at the center of the design choices. First and foremost, the design is meant for them. You do that through telling stories.
For instance, when a clinician looks at shared decisions support, they’re apt to think of it as an event. When we did our research, we encountered many patients saying, ‘I say yes or no to the doctor. Then I go home and worry about it. I think about it. I start asking questions.’ We see it as a process. The design of the tool we’re building is basically two modalities with similar information. One is the mode where you’re in the examination room with your doctor. The story you tell is about the doctor going through practical information that demonstrates your risks and benefits, so the doctor can connect with the patient and the family members. That material, including the doctor’s recommendation and other physicians’ treatments, have been shared with the family via the internet. Then they can examine it more when they get home. Anybody who has been in a decision-making situation in the physician’s office knows it’s a lot of information to take in at once. You don’t always understand the information -- and you don’t even know how to spell the words. It’s a process. When they get home, there are sharing capacities too: ‘My brother-in-law knows something about this.’ This leads to the additional resources beyond the information the doctor has provided. That information goes back to the doctor, who sees the patient is concerned, for instance, about a particular abstract risk. He can then talk to her about that, so she can make the best choice.
What’s next for you and this work? Where do you see this idea of collaboration in healthcare going?
A colleague of mine, Peter Jones, recently wrote a book called Design for Care. He says there is a call to care that you can respond to or not. I think that’s the truth. Novel technologies and data repositories are inspiring us to realize what we never considered possible. As we’re looking for greater efficiencies in healthcare and as computerization becomes prevalent, there’s always the risk that you’re going to become a number. Design methods shape these informational tools. Meanwhile, the quality of relationships among clinicians, patients and family play a critical role in determining the outcome.
Doctors are under a lot of pressure these days. They’re not compensated the way they used to be and they feel constrained by the amount of time they’re allowed to spend with patients. So there’s a reticence about designing things for them because they don’t want to spend a lot of time inputting data. There is a logjam of innovation in healthcare and it has a lot to do with the prevalence of electronic health records. That is my target going forward. There is a lot of work that hospitals need to do to extract what is clinically relevant information out of this record. It’s a shame, a bit of a tragedy even. Instead of using an IT-enabled care management system that facilitates great communication with your patient, doctors are using software that behaves like an accounting system. We’re trying to deliver care that has all these qualitative characteristics, but we’re encumbered by electronic health records that were meant for something else. That’s the biggest opportunity we have out there.