This post summarizes a research paper, available here. The paper will be presented at the ACM Conference on Computer-Supported Cooperative Work and Social Computing on November 7th.
Olivia¹ lit up the room with her energy. She was optimistic, bubbly, and resilient. She consistently said that cancer was only a minor hurdle that she was going to conquer. She had a fighting spirit and seemed absolutely fearless.
As we talked, she shared a story about when she began chemotherapy. She recalled that the nausea hit her quickly and violently. She spent the entire night in the bathroom, unable to eat or drink, becoming increasingly weak and dehydrated. She lived by herself, and the clinic where she received cancer treatment was closed for the night. She was alone and didn’t know what to do. Was this normal? Should she go to the hospital? Was there anything she could do to deal with the nausea at home? She ended the story saying it was the most scared she had felt since the diagnosis.
Olivia’s story is far too common. Over the past six years, I have interviewed many amazing women and men about their experiences battling breast cancer. Following a cancer diagnosis, an individual has to become their own health expert, learning about their diagnosis, treatments, side effects, and strategies for coping socially, financially, and emotionally.
Access to health information can help reduce patients’ anxiety and improve coping skills. However, patients are often dissatisfied with the information they receive. In several studies the majority of patients have indicated a desire for more information. Information seeking challenges can be exacerbated within rural communities, due to the limited availability of health resources, and increased barriers to care, such as transportation issues and feelings of isolation.
¹Name changed for privacy.
Our Georgia Tech led team, including coauthors Jeremy Johnson and Elizabeth Mynatt, have been investigating how mobile computing could alleviate current barriers to accessing trusted and timely health information. We developed MyPath to connect individuals at any point in their cancer journey, spanning diagnosis, treatment, and post-treatment survivorship, with personalized and trusted online health information.
Our application uses a person’s diagnosis and treatment information to make personalized information recommendations. Patients can also share problems they are experiencing managing cancer in their daily life, and immediately receive information tailored to their personal support needs. Thus, MyPath not only connects individuals with information about cancer treatments and side effects, but also a much broader range of information about interacting with family and friends, managing work, insurance and travel, and finding local help in the community.
We partnered with a cancer clinic in the Southeast United States that serves a large, primarily rural, geographic area. Over the first seven months of our study, we enrolled twelve newly diagnosed breast cancer patients. Participants received a tablet computer, which they were able to keep, that included the MyPath application.
A promising result from this study is that participants used MyPath’s targeted recommendations to stimulate important coping behaviors, helping them to address challenging healthcare experiences and needs. Participants’ shared several ways that the MyPath information influenced their health management.
1. Health information encouraged participants to communicate with their care team. Participants used the materials to figure out which side effects they should discuss with their healthcare team. One participant shared that based on the information she read on the application, she decided to tell her nurses about a side effect she was experiencing:
“It got me thinking maybe I should tell them more about the little side effects because you never know what could be really important. We started talking about the neuropathy in my fingers and she told me don’t let it go too far. Right now, we are just going to watch it because it just started. But she told me not to let it go too far because if it does it may not be reversible, and they have things they can prescribe to help with it. So that was important to tell them.”
Determining which information to share with doctors and nurses can be a difficult process. However, as shown in this example, early communication can be key to effective health management.
2. Managing Changes to Everyday Life. Participants described specific ways that the information they read helped them immediately respond to changes in their daily life. Participant commonly mentioned that the cancer diagnosis changed their relationships with family and friends. As one participant said:
“People sometimes don’t know what to say or do. It was good, it gave me advice about talking to friends or family about it.”
A cancer diagnosis can have negative social consequences. Thus, participants would use the information to figure out how to address communication issues with family and friends.
Personalized and dynamic content can help transform health information into a usable resource, rather than something to be organized and recalled later. Our results have implications for supporting health management within rural communities and the importance of scaling support to a large range of needs. Key design features, such as pacing recommended resources, appear successful in motivating sustained use and catalyzing healthy actions by patients throughout their cancer journeys.
For more details about our methods and findings, please see our full paper that has been accepted to CSCW 2018. Full citation and link to the pdf below:
Maia Jacobs, Jeremy Johnson, and Elizabeth D. Mynatt. 2018. MyPath: Investigating Breast Cancer Patients’ Use of Personalized Health Information. Proc. ACM Hum.-Comput. Interact. 2, CSCW, Article 78 (November 2018),21 pages. https://doi.org/10.1145/3274347.