Chronic disease is society's biggest health-care challenge. Even if we do a good job preventing disease by helping people live healthier lives, it's inevitable that for at least the foreseeable future, conditions like heart disease, diabetes, and depression will be our society's most substantial health-related issues. The term "chronic" is used to describe conditions that are long lasting, so it shouldn't come as any surprise that they are incredibly expensive, both financially and in terms of quality of life. (See the U.S. Center for Disease Control and Department of Health & Human Services for some striking statistics.)
We must design home-care tech that integrates into people's lives.
A big change to the way we help people live with these conditions could go a long way toward improving the effectiveness of our health-care system, reducing costs and improving access for everyone. And fortunately, not only is this a public-health opportunity but a huge opening to make a difference in people's lives — to get their attentions before disease gets out of control, which is when things get both unpleasant and costly. For many, the diagnosis of a chronic condition is scary, but it also brings their health into focus for the first time in their lives. In this moment, people may be receptive to dramatic interventions and be motivated to focus on their health.
Chronic-disease care happens where people live their lives. Patients with diseases like heart disease or diabetes typically visit a hospital or doctor's office relatively infrequently (usually between once a month and once a year). The real care related to these conditions actually happens every day in people's homes and workplaces, and is often delivered by "patients" themselves and their loved ones. We have to challenge ourselves to design home-care technology to better integrate into people's lives.
Nurses, doctors, and other professionals are hugely important to any real improvements to chronic care, but they aren't always around. Technology can help fill the gaps, possibly in a way that may even help an individual feel more like an empowered person, less like a helpless patient. There's growing momentum around the idea that the consumer electronics of the future must not only entertain us when we're on the couch but also help us get off the couch, and not only keep us connected with each other but also with ourselves and our bodies.
There's a world of opportunity for the connected home to better support people who are managing chronic disease. While there's a lot of diversity in the conditions that fall under the heading of "chronic," from cancer to depression, and there are clearly no one-size-fits-all solutions, there are some common things a home-care ecosystem should provide.Strategies for managing chronic disease
Managing a chronic disease almost always requires substantial changes in a person's behavior; they often must replace habits that led to the disease (like eating lots of sugar or smoking) with new habits (like eating veggies or exercising) and almost always must establish new routines around their care regimen (like weighing themselves, testing blood-sugar levels and giving themselves a shot). The same enablers of behavior change for prevention I discussed in my last post apply here: health and behavior data tracking, assessments and feedback from the data, goal-setting and progress tracking, gentle nudges, and the involvement of social networks.
But there are some new considerations here. Because it's necessary for interventions to be higher impact and have more immediate results, these enablers should present a different face than for a well person who's trying to lose a couple of pounds and get their blood pressure down a bit. And there are new needs — while all people would be well-served by better ways to communicate and collaborate with their doctors and nurses, a person with several serious conditions may be coordinating the efforts of a pretty large care team, which right now requires countless hours of phone calls, faxing, photocopying, and (for lack of a better term) project management.The activated patient
The Wagner Chronic Care Model is a good starting place for talking about how to improve chronic care. Much of current medical thinking on chronic-disease management is framed by the ideas developed by Dr. Ed Wagner and others at the MacColl Institute for Healthcare Innovation. This model talks about how patients, practice teams, communities, and health systems can come together to improve things like care coordination, adherence to best practices, and patient education and empowerment. (Here's a good video of the Wagner explaining the model and the thinking behind it.)
How do we motivate people to take charge of their own health?
But implementation of the Wagner Model has largely been very institution-oriented. While the application of this model has already shown some very positive results, unsurprisingly much of the work that has been done has come from the institutional side — changes to clinical workflow and the way clinicians interact with patients. This is great and very welcome, but when we talk about creating "informed, activated patients," I believe there are some underutilized ways technology can help patients activate themselves and one another.
This brings me to the big question: How do we motivate and enable people to take responsibility for their own health and health care? It's really common for us to be very good at caring for our friends and families, not to mention our homes, cars, and jobs, but we don't always take the same level of care with our own minds and bodies. The trend in consumer electronics toward more personal experiences on tablets, smartphones, and even television is a perfect wave to catch with the idea of self-care.
I really like the ideas put forth by the Washington Health Foundation around "people-centered health." Among other things, they take a bit of a rebellious stance and promote the radical idea that people must be empowered to be 'partners in their health,' and that the current medical system (and a lot of supposedly "patient-centered design?) discourages individuals from solving their own problems by treating them as ?patients." They propose a number of very interesting design principles that are meant to help create services that actually put people in control of their own health care.
I'd like to add something to those tenets: "Good person-centered health design creates an emotional tone that is conducive to self-care." What I mean by that is in order to effectively reduce the impact of chronic disease, we have to encourage people to establish sustainable, healthy ways of life for themselves, rather than being "treated" by nurses and doctors. Emotional tone is key because this is how exercise and healthy food become sources of joy, rather than unpleasant chores, and a treatment regimen becomes the enabler of good living, rather than yet another indignity. To create this tone, we must bring the same level of design craft and attention to home-health-care experiences as we do to the best housewares and consumer electronics.Home health-care technology has an image problem
Home health care is nothing new. Doctors don't make house calls anymore, but millions of people in the U.S. alone receive some form of home care (mostly from nurses). Sadly, it is very expensive for patients with chronic conditions like congestive heart failure to get in-person visits with the level of regularity that is required for good disease management.
I haven't seen any telehealth device that answers where it should live in the home.
This is where devices and services come in. There are a number of existing telehealth devices (Health Buddy and MobileCare Monitor, for example) and mobile-phone based services (like WellDoc) that help patients collect and upload vital signs (such as blood pressure and weight for a person with congestive heart failure) and qualitative assessments about things like pain and mood, provide feedback in response to the data, remind them about their care regimen, and upload the vitals to a central nursing station where software can help nurses spot trends that may require in-person intervention.
Because of limited Medicare and insurance reimbursements for telehealth, most of these products are designed to be as inexpensive as possible. Which is admirable, but they don't stack up to the kind of digital experiences people are coming to expect in the rest of their personal or professional lives, and I worry that this is seriously limiting the impact these services can have on improving people's health.
Home health care has an image problem: The products look and feel more like the beige-box PCs of the "90s than something that would look right in my mother's kitchen. If the computer hardware industry can get this right, why not health care" If we can do a good job making these devices and services enjoyable and empowering, I have to believe there's a huge market for people who would pay for their own high-quality home-care devices and digital services, which could, as a result, help them become more engaged in their own care.
Unfortunately, in most cases, very little care has been taken with the design of human-facing aspects of these products and services. They suffer from usability and readability challenges, and quite frankly, both the appliances and mobile apps tend to deliver the user experience of a text pager. I haven't seen a single telehealth device that articulately or compellingly answers where it should live in the home; most of them look like they belong in a doctor's office or nursing home, and almost none of them has the fit and finish of high-quality consumer products.Designing for people's lives
This attention to fit and finish isn't just an aesthetic thing. As designers, we have to carefully consider how these products and services fit with people's lives, in terms of both "workflow" and emotional tone.
The Cimzia syringe (pictured below) is one example of what that can look like. A team at Smart Design worked with UCB to improve the effectiveness of Cimzia, a drug therapy for rheumatoid arthritis (RA), a disease that affects millions of people. Put simply, if people don't take the medication regularly and properly, Cimzia doesn't work properly. And the tricky thing about this particular audience is that the disease makes things like opening medication packaging and using a syringe very difficult to do. The new Cimzia syringe allows patients to exert 48% more force than with a traditional syringe, increasing the number of RA patients able to self-administer. The packaging was designed to be easily opened and provide clear, reassuring instructions and a warm, caring experience — not quite typical for pharmaceutical packaging.[The Cimzia syringe, designed by Smart Design]
How can the thinking embodied in Mint.com apply here?
The 2010 IDEA award?winning Vitality Glow Caps (pictured up top) are another interesting example. These lids for pill bottles use light and sound to remind people to take their meds, which is useful enough by itself (though may be too much of a light show for the chronic-disease patient taking 12 pills a day) but a whole service ecosystem shows a deep consideration for how medication regimens can better fit into people's lives. The reminder evolves from "subtle to insistent," ultimately culminating with a phone call if the medicine isn't taken within two hours of the first reminder. The system also helps with refills and supports goal setting around 'compliance.' I'd like to suggest, however, that "compliance" doesn't sound either very fun or empowering, which may not be an unimportant detail.
I think we have some vital work to do here. It might not be a coincidence that both of these examples are related to the important yet relatively simple and self-contained behaviors involved in medication administration. Open this up to the true diversity of patient health and behavior information, and we have a very complex design challenge on our hands. Looking beyond health care, I?m interested in how the thinking embodied in things like Mint.com or EnergyHub could apply here.
As the smart folks at the British service design group Participle put it when talking about their compellingly progressive vision of mobile services for chronic disease patients, "It is motivation, not medicine, that is required." We need to work on coming up with a holistic chronic-disease-care experience that builds off our substantial clinical understanding of how to manage chronic conditions properly, and ultimately results in something that people can feel positively and passionately about; by doing this, we may be able to help people take control of their own health — and in no small way, live better lives.
[Graphics by Lenny Naar & Stephen Szermer]