If you’ve ever tried to research information about a specific illness online, you know how daunting the task can be.
One Google search leads you down a labyrinth of conflicting information, countless websites providing their own specific set of recommendations, and by the time you’re finished you are more flummoxed than when you began.
And that’s just for a headache and a nagging cough. Imagine what those who are going through more serious afflictions – like breast cancer – encounter.
The American Cancer Society estimated that about 246,660 new cases of invasive breast cancer would be diagnosed in women in 2016 alone. And while oncologists, navigators and other healthcare professionals do fantastic work in guiding their patients through the challenging journey, the sheer number of patients makes a more personalized approach difficult.
MyPath is a mobile application designed to help individuals on their cancer journey, a concept Jacobs became familiar with as she volunteered with Susan G. Komen as an undergraduate at the University of Wisconsin.
“We see a lot of health applications now being focused on a singular need or a singular moment in time,” Jacobs said. “But I’m trying to push away from that and develop these more holistic and adaptive systems that can support people’s needs as they do change over time.”
Now in her fifth year pursuing her Ph.D. in Human-Centered Computing in the College of Computing, Jacobs is working to provide easier access to more personalized information that changes and updates over the course of an individual’s battle with breast cancer – from the day of diagnosis to survivorship.
It begins with a home screen that offers tabs to various needs. One provides information on treatments, another on day-to-day matters. There are others for health and wellbeing, social support, emotional support, and weekly surveys users can fill out to help tailor the application to their needs.
On the survey, individuals can check specific areas that may have been a problem for them over the past week, including child care or housing, insurance or treatment decisions. Beyond that, they can select a level of distress, from 1-10, that they have felt over the past week. From there, they receive specific resource recommendations that have been sifted from the vast collection found online.
Dhar worked on the design of the tool. Jacobs and she spent time going through and iterating her design, refining it and improving it each time. Now, as the UX designer (or user experience designer), Dhar focuses on enhancing user satisfaction by improving the usability and accessibility provided in the interaction between the user and the product.
“It’s not that there’s no information out there,” Dhar said. “It’s just too much information. The biggest need was to tailor what information is needed in that moment for that patient.”
This project is five years in the making for Jacobs and nearly a full year for Dhar, who began pursuing her Master’s in Human-Computer Interaction at Georgia Tech after doing her undergraduate work in her native India. Dhar joined Jacobs and MyPath in January of this year.
Jacobs, whose grandmother is a three-time cancer survivor, initially worked on a project surrounding breast cancer, called MyJourney Compass, early during her time at Georgia Tech. That project, also a mobile application, in many ways inspired the development of MyPath. Where MyJourney Compass did not have any personalization or adaptive features, that is the primary contribution of MyPath.
“With MyJourney Compass, we were really just exploring if and how people would use mobile tablets throughout their cancer journey,” Jacobs explained. “The tablet had static health information, a set of PDFs recommended by the Harbin Cancer Clinic. In addition, patients had their email, calendar, doctor information, games, and could add their own content, as well. All of that will continue to be on the new tablets.”
MyJourney Compass was funded by the Georgia Department of Community Health. Using research from that application, the team was able to secure a larger grant from the National Cancer Institute, which has funded their work on MyPath.
Early on, she spent her time working with Cancer Navigators, a nonprofit organization based in Rome, Ga., that serves as a complement to the medical expertise of cancer care providers by guiding those affected toward a better understanding of their diagnosis and care.
“My first year was just trying to get to know (Cancer Navigators) and what they do,” Jacobs said. “What we found is that they offered this amazing personalized support, but they work with 900 patients a year, so it’s just a huge responsibility. They’re limited with time and resources, so it came down to how we can help support their navigation practices.”
That organization partners with the Harbin Cancer Clinic, where MyPath is set to launch next week, the last of October’s Breast Cancer Awareness Month.
The plan is to offer those diagnosed with breast cancer at the clinic the opportunity to participate in the application and a study that seeks to understand how a personalized adaptive system influences patient experiences using standard survey metrics that assess things like physical and emotional wellbeing as well as patient engagement.
Half the group in the study will be given a tablet that is personalized and adaptive to each patient, while the other half will receive one that provides all the health information but lacks the personalized component. They will take four surveys over the course of a year, and the responses will be compared.
For now, the application will be in a beta mode available only to those participants at the Harbin Cancer Clinic, but Jacobs envisions a possibility where this application could be used on a much broader scale.
“If we’re able to show that this has some impact on patients’ experiences, satisfaction with care, physical and mental wellbeing, all of that could motivate the need for it more broadly,” she said. “I think Georgia Tech has really great resources for turning research projects into products. It’s not what we’re looking into now, but it might become that as we see what the research finds.”
In addition, Jacobs and Dhar will be talking directly to participants to understand just how the technology fits into their daily routines and supports their personal and health goals.
Dhar’s Master’s project will focus on creating a better “ecosystem” between patients, doctors, and navigators.
“We have information from patients and doctors, but we don’t necessarily have a way for the navigators to get that information in a format that reduces their time spent on getting up to speed with the patient,” Dhar said. “We have so many pieces, we just need to connect it together into one ecosystem.”
As for the future of MyPath, both Jacobs and Dhar see plenty of potential to build and expand upon the project as they receive feedback from doctors, patients, and navigators.
“It’s never fully finished,” Dhar said. “You always get feedback, and then you make it better and so on. I don’t think, as designers, we can ever say that something is truly finished.”
“There’s a real opportunity here to work on a project where you are seeing a direct impact on people’s lives,” Jacobs added. “That makes it pretty special, I think.”
Jacobs was named a 2016 James D. Foley Scholar and Dhar a finalist for the GVU Distinguished Master’s Student Award. They are advised on the project by College of Computing Professor Beth Mynatt, who is executive director for the Institute for People and Technology and the director of the Everyday Computing Lab.