CENTENNIAL, CO—Four years ago, Julie Singer didn’t know anything about strokes or taking care of a stroke survivor. But since her husband had a hemorrhagic stroke, she has been his sole caregiver. ”It’s a new experience for me. I have just been learning as I go,” she says. “Through a series of crises, I have had to figure it out.”

Singer’s capability as a caregiver got a boost two years ago, when she bought a smartphone. “It just makes everything I have to do all day that much easier.” She uses it to navigate Denver, where she and her husband had moved from a rural area so he could get better health care. She uses the phone to keep in touch with people and its calendar to stay on top of her husband’s many medical appointments; she listens to music, gets answers to questions, tracks her own exercise, and even uses meditation apps.

But, as far as having the mobile device help with all the tasks that go into managing her husband’s condition, Singer has been disappointed. “At one point, I did a Google search for caregiver apps and found websites that listed suggestions for caregivers, but for the most part, I just haven’t found them that useful,” she says.

Singer longs for a single mobile product to handle all her tasks related to her husband’s stroke care, which include continuous monitoring of health measures, staying current with a constantly changing list of medications and appointments, and encouraging her husband to keep up his exercise program.

Stroke survivors agree. A 2011 survey by National Stroke Association showed “keen interest” in smart phone apps, says Amy Jensen, the association’s education director. Major concerns were medication tracking, blood pressure and cholesterol monitoring, and medical appointment management.

“There is a paucity of applications specific to stroke, either survivors or caregivers,” says Steven R. Levine, MD, a professor of neurology and emergency medicine at SUNY and Scientific Principal Investigator to the project.

Now, a team led by Jensen and Levine, with funding under PCORI’s Pilot Project program, is aiming to develop customized apps for stroke survivors. The project is a collaboration of National Stroke Association, State University of New York (SUNY) Downstate Medical Center, and the Arthur Ashe Institute. The team began its project by working closely with stroke survivors and their caretakers to determine needs, knowledge, attitudes, and behaviors regarding mobile technologies.

“It’s unbelievable how little effort has actually gone into talking with consumers,” says Steven R. Levine, MD, a professor of neurology and emergency medicine at SUNY and Scientific Principal Investigator to the project.

The team expects to identify a variety of needs. Stroke can impair memory, vision, motor, sensory, language, and other skills. Stroke survivors often must deal with other health conditions as well, such as high blood pressure and diabetes. Smoking, unhealthy diet, and sedentary lifestyle are also problems for many stroke survivors.

The small group brainstormed about their experiences and what they’d like to see in a mobile app.

Julie Singer Patient Partner

Given that variety of challenges, Singer says the best app might be one that lets users choose among many health-related functions. She has found caregiver apps that try to house too much information. “It would be nicer if there was some way you could tailor an app for the kind of information you want to store,” she says. “If there’s a lot of superfluous information, I wind up not using the app.” Singer participated in a focus group of family caregivers in Denver. “It was very interesting,” she says. “The small group brainstormed about their experiences and what they’d like to see in a mobile app.”

The group had suggestions that software developers may have overlooked: functions to help stroke survivors with vision or communication problems get help in an emergency or to monitor a stroke survivor to provide a caregiver on an errand with peace of mind.

The research team has held six focus groups of stroke survivors and caregivers in Denver and another six groups in New York City. The researchers are now developing a set of questions to survey more than 70,000 stroke survivors and caregivers, asking them about their knowledge of mobile technology, their access to such resources, and their willingness to use that technology for health management.

In addition, the team will test currently available apps to identify their benefits and drawbacks—breaking down the data by race, ethnicity, gender, and age. The stroke survivors and caregivers also will test the usability of current mobile applications. Levine says that the team might even create a rating service for the available apps relevant to stroke survivors.

Finally, the researchers will use their data to design and create more useful mobile apps, and stroke survivors and their caregivers will assess that prototype. “We really want to pinpoint their needs and make our app very consumer-friendly,” Levine says.

According to Jensen, the new project could serve as a model for other disease- and condition-specific health apps.

“Putting people at the center of app development is common sense,” Levine concludes.

Posted: February 27, 2014; Updated: March 25, 2014


Health Conditions Health Conditions These are the broad terms we use to categorize our funded research studies; specific diseases or conditions are included within the appropriate larger category. Note: not all of our funded projects focus on a single disease or condition; some touch on multiple diseases or conditions, research methods, or broader health system interventions. Such projects won’t be listed by a primary disease/condition and so won’t appear if you use this filter tool to find them. View Glossary
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