Mobile Health at Berkeley: Putting the Patient at the Center of Design

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Mobile Health at Berkeley: Putting the Patient at the Center of Design

For UC Berkeley alum Nikolai Kirienko, the most powerful tool to fight his Crohn’s disease was not a pill or procedure—it was his smart phone. Plagued by this notoriously difficult to treat inflammatory bowel disorder since 7th grade, by college Kirienko had found that tracking his symptoms, diet, and other behaviors helped him understand and manage his condition better. But it was cumbersome to track these details by hand and even more difficult to convey this information to clinicians during the few minutes he’d have at check-ups.

Inspired by other mobile applications he had seen that track personal health data, he reached out to researchers at the UC Berkeley School of Public Health, Healthy Communities Foundation, UCSF Inflammatory Bowel Disease Center, and iMedic8 to design an application that would help patients collect, synthesize, and communicate how their symptoms varied depending on diet, medication dose, exercise, sleep, and other factors.

Often referred to as mobile health or mHealth, the use of mobile applications to enhance medical and public health practice has grown exponentially over the past decade. Whereas commercial app design may involve designers, content experts, and computer programmers, the multidisciplinary research team that designed CrohonologyMD—as this app would be dubbed—included vital additions: doctors and patients. As mobile apps become an increasingly important part of research and care, this intense focus on patient and physician input has become a hallmark of the Affordable Care Act, as well as the many mHealth initiatives pioneered by Berkeley faculty and students.

“So often you see ‘experts’ designing these things from soup to nuts, but we turn that on its head and let the users be at the center of the design process,” says Clinical Professor Linda Neuhauser, director of Health Research in Action, a School of Public Health center dedicated to meeting the health communications needs of diverse audiences. Neuhauser has worked on several mHealth projects and is a principal investigator for CrohonologyMD.

Crohnology.MD: Linking doctor and patient through mobile apps

In designing the app, the ChronologyMD team sought to address key gaps in patient/provider communication and collaboration. They aspired to find a way to collect personal health details easily, to synthesize it in a useful manner, and to facilitate patient access to their collected data (visualized in graph form in a second application), thus allowing the patients the ability to be better informed the next time they interact with their provider.

Patients with Crohn’s disease experience a wide array of symptoms, including abdominal pain, diarrhea, vomiting, and fatigue, that often respond only intermittently to medication or lifestyle changes.

Objective: Weight; Activity; Sleep; Labs.  Subjective: Pain; Energy; Stress; Med Adherence

A screenshot of the CrohnologyMD app showing graphs of the patient narrative

These symptoms and factors interact in a complicated web that make it difficult for physicians to parse out what, if anything, is helping the patient. At the same time, patients find it challenging to recall all events that may have impacted their health preceding their clinical visit or to convey the ups and downs of their symptoms during brief office visits.

Using a participatory, user-centered design process that was continually guided by input from patients and doctors, the team carefully crafted an app that would hit the “sweet spot” in data collection: enough information to be clinically useful, without overloading doctors with too much data or burning out patients with too-frequent data requests.

“This is really going to help the patient narrative for any chronic disease. It’s going to vastly improve the ability of the patient to inform the doctor about what’s going on,” said Kathleen Morrison, who works with Healthy Communities Foundation, the non-profit arm of the Healthy Communities Institute. Morrison was the project’s director.

The result was two applications. The ChronologyMD app is a tablet and smart phone-based application that helps patients track this personal data; including biometric devices that tracked weight, activity levels, and sleep. The Cronograph application is a partner tablet application that incorporated symptom changes (including energy, stress, and pain), medications taken, and laboratory test results.

“You can’t get this fine level of information off a medical record, but it’s incredibly powerful for treatment and behavioral change”

“The app empowers people with the information needed for a higher order of understanding of their health and how make decisions about it,” says Neuhauser. “You can’t get this fine level of information off a medical record, but it’s incredibly powerful for treatment and behavioral change,” she says.

During a nine-month pilot test of the app in 30 patients, not only did the app help patients realize how things like sleep and diet were linked to their levels of pain and other symptoms, in some cases the data provided by CrohnologyMD led doctors to change medications or otherwise alter their treatment approach.

“We’re seeing a macro shift in medicine towards shared decision-making between patient and provider, and the need for timely, shared information is very valuable clinically,” says Clinical Professor Deryk Van Brunt, who is also CEO of the Healthy Communities Institute and a principal investigator on the project.

The CrohnologyMD model of participatory design and doctor-patient integration has potential for a number of chronic diseases, Neuhauser notes.

“I think we’re really on to something here—an amazingly powerful approach,” she says. “Once we enable people to track and see in tandem many kinds of information that helps them make better decisions about their health, this is really an amazing leap forward,” Neuhauser says.

BingoWALK: Bringing board games to the streets

Keeping seniors physically active is one of the most powerful—and the most challenging—interventions in eldercare.

“The simple act of walking is the great elixir for the elderly. It’s associated with improved physical health, cognitive gains, and reduced risk of depression,” says William Satariano, professor of epidemiology and community health.

“Despite the simplicity of it, not many seniors walk regularly, and a lot of that has to do with feeling comfortable in their neighborhood environment,” Satariano says. “It’s not only a matter of convincing seniors it’s good to walk, they need the opportunity and the incentive,” he adds.

bingowalk

A screenshot of BingoWALK in the design phase

Taking their inspiration from existing mobile game apps, Satariano and others at the UC Berkeley Social Apps Lab wanted to create a mobile game that would make walking a fun, manageable, and social experience for the elderly. Playing off seniors’ love of an age-old table game, the team created BingoWALK, an interactive tablet application that combines Bingo with a neighborhood scavenger hunt. Through the game, groups of two or three seniors follow a generated walking route through the neighborhood surrounding their local senior center, collecting “stamps” on their Bingo card as they reach each checkpoint on the route. Just like in table Bingo, the first to collect five stamps in a row wins.

The game requires no previous experience with a tablet, and initial field tests at the North Berkeley Senior Center returned positive reviews from the seniors, as well as a number of unexpected benefits.

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Professor William Satariano (right) tests the BingoWALK app with users.

“The seniors said they loved the game, but the thing they emphasized the most was how much they enjoyed being out with others—the sociability of it,” says Satariano.

“One of the seniors, who is homeless, said that it was the first time he’d been able to walk and talk with people in eight months, which really underscored to me the importance of the social element in this game,” he says.

Familiarity with tablet technology, the ability to read an electronic map, and increased awareness of the neighborhood were just a few of the other positive “side effects” seniors reported.

Satariano and his colleagues are working to develop a “suite” of games to satisfy different preferences and help sustain interest and participation of seniors by varying the types of games over time.

With the help of the seniors’ feedback, Satariano and team are working to hone the usability of the applications and will be developing an National Institutes of Health grant to test the games in a larger, more diverse cohort.

Of prime importance in the application’s evolution is adaptability to a variety of populations and neighborhood environments, Satariano says.

“We’re obligated to address not only what is most effective in achieving health outcomes, but how we can achieve equity of access,” he says. “If we address the first and not the second, we’ll only aggravate health disparities,” he adds.

MSpray: Mobile pesticide tracking in South Africa

When Brenda Eskenazi set out to study the health effects of indoor pesticide spraying in South Africa, she quickly realized she was facing a data roadblock: the paper records used to track pesticide use were largely inaccurate and incomplete, making it impossible to do her research.

Before malaria season in South Africa, the inside walls of many households are sprayed with strong pesticides, including DDT, to reduce the mosquito population and thereby reduce the transmission of malaria. Although it is outlawed in most of the world for its toxicity, DDT is still used in South Africa because attempts to discontinue use of the pesticide have resulted in deadly surges of malaria.

“We were supposed to pick households that were sprayed and unsprayed to look at the health impact of being exposed to these chemicals, but none of the paper records matched up,” says Eskenazi, director of Berkeley’s Center for Environmental Research and Children’s Health. “They were just in a pile on the floor at the government’s health office,” she adds.

Eskanazi teamed up with Associate Adjunct Professor Edmund Seto to see if there was a way to use smart phones and geo-tagging to improve South Africa’s pesticide tracking.

On a shoestring budget, with spraying season only a couple months away, Eskenazi, Seto, and a team of undergrads rushed to develop a smart phone app that South Africa’s malaria control program could use that very fall. In a matter of weeks, the first iteration of mSpray was born: an app that foremen (spraying managers) could use to track which households were sprayed when, who conducted the spraying, and how much of each type of pesticides were used.

“When the field officers submit the data, it goes to the cloud, where it can be immediately accessed in Berkeley and data can be analyzed in real time,” says Seto. “The GPS coordinates also allow us to map where the spraying program goes.”

The app and 10 smart phones were sold to South Africa’s malaria control program and piloted in the field starting in November 2012. Taking feedback from this pilot, a second iteration of the app was made. Seto and Eskenazi are currently seeking funds to continue and expand their work implementing the app in South Africa.

The depth, accuracy, and timeliness of the data mSpray provides is not only a game-changer for the management of South Africa’s malaria control program, it enables much-needed research on the health impacts of indoor pesticide spraying, Eskenazi says.

“DDT is both a poison and a lifesaver in this situation,” Eskenazi says. “We need to know what impact it has on health so we can be sure to use it with the greatest caution and perhaps even peel back how much we use, while still being protective against malaria.”

With the patients as their guide

While apps for every facet of health proliferate like wildfire, what sets Berkeley’s initiatives apart is a dedication to participatory design. Whether working with pesticide sprayers in Africa or elderly community members down the street, Berkeley researchers are dedicated to including patients and other users in every step of development.

“The apps we’ve created would not have been as successful as they were without a pain-staking, iterative approach that sought patient feedback at every step along the way,” Neuhauser says. “It’s about empowerment—for patients to get better care and clinicians to give it.”

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