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Holistic Self-management of Symptoms

School of Nursing

University of British Columbia

April 2022 - present

In this School of Nursing research project at UBC, I am the UX design lead tasked with prototyping a mobile assisted tool for older adults with cancer to self-manage their symptoms. I lead a student team, comprised of a Nursing PhD student and a CS undergrad.

Roles: project lead, main evaluator, main designer (lofi prototype), co-designer (medfi prototype).

 

The research is headed by Dr. Kristen Haase and Leanne Curry, and the team is multi-disciplinary, with researchers from Nursing and Computer Science as well as our patient partners who lend their experiential knowledge to the design process. We are currently interviewing users to evaluate our medium-fidelity prototype.

Background and Goals

The motivation behind this project centers around how to design for better quality of life and well-being for older adults (OAs) who are experiencing cancer and other co-morbidities that come with age (e.g., heart disease, arthritis, lower mobility). We use Personal Informatics, the use of tools to collect personal information for the purpose of self-reflection and monitoring, to help OAs make sense of their oftentimes complex health needs amidst declines in cognitive and motor abilities. 

 

Goals
  • Design a prototype that addresses OAs' pain points of being overwhelmed with their cancer diagnosis while also accommodating their cognitive, visual, and mobility declines.

  • Evaluate the impacts of personal informatics (i.e., tracking data, reflecting on the data) and whether it can support quality of life and self advocacy.

 

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Key supported tasks were identified through our brainwriting exercise.

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Based on research by Johnson and Henderson, we developed a conceptual model, a coherent, task-focused way of conceptualizing what the design could be: LINK

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Information architecture of our MVP design.

Methods

We used various UX methods to achieve these goals.

Ideation and Prototyping
  • Brainwriting with the research team and patient partners to identify what core tasks should be supported
  • Conceptual model of our initial idea
  • Lofi prototyping using Axure
  • Medfi prototyping using Figma

Prototype Evaluation
  • Remote evaluation with 2 OAs to validate the conceptual model.

  • Remote task-based evaluation with 8 OAs to understand the usefulness of the prototype.

  • (Current) Remote and in-person usability study with 10 OAs and a focus group of health care providers.

  • Data collection

    • Qualitative - interview questions that probe into usability and how the app can be integrated within their health management practices​

    • Quantitative - task completion rates (5 main tasks, multiple subtasks) and the SUS. 

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Lofi prototype: We used Axure because we could add the tasks on the side, making it easier for OAs to know how to navigate the pages on their own time. The prototype can be accessed here.

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Pages from the medium fidelity prototype showing the summaries task flow. Here, the user can see a textual summary of the trends of a particular week, as well as the corresponding visualizations. Our participants have overwhelmingly determined that this task helps them make connections across different facets of their health and emotions. The interactive version of the medium fidelity prototype can be found at this LINK.

What We Learned (so far)

We learned that the prototype is easy to navigate, intuitive, and desirable for a more meaningful engagement with their health. As of Jan 25, 2023, several key themes have emerged from our 4 evaluations:

  • the app has the potential to serve as a tool for self advocacy, giving them the knowledge to take charge of their health; very important as health care providers cannot spend a lot of time with them to customize their health needs

  • It provides a better comprehensive understanding of health trends over longer periods of time (how symptoms and lifestyle choices are correlated)

  • May be more suitable for inexperienced patients, as the more experienced patients already have a system in place to keep track of their health

Impact

The research contributes to a growing area of research on how to support older adults' health management practices with technology. The barriers to designing for this context and population are many, including accommodating for their cognitive/motor/visual declines as well as low confidence around using technologies. Based on our evaluations, our participants have found it easy to use. What is even more promising is that even those who do not own a smartphone found it intuitive to use.

 

Next steps involve submitting our findings to an oncology journal to share with the broader research community. 

My Reflections

Lasting impacts of the pandemic​: While the rest of Canada have seemingly returned to normal, our work with a vulnerable population has meant we need to take extra care of the participants we recruit. Unfortunately, all evaluations of the two prototypes so far have been through Zoom. We have plans to evaluate in person using a real phone to capture usability issues that have evaded us while using a browser window.

Patience is key with OAs: I have learned to be patient as they process my instructions during the evaluations. I try to keep a safe, non-judgmental environment where they are encouraged to explore and make mistakes, similar to how I interact with my older relatives. An interesting behavior I noticed was that once they overcame their initial reservations, they seemed very talkative, wanting to share their experiences with a friendly person. Future research centering around the emotional and social support of OAs may be a valuable avenue to explore. 

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