IADT · Breakthrough Cancer Research / Research · Health communication
MA Design for Change
Research into unmet information needs during breast-cancer treatment.
Working with patients and research partners, we combined lived experience, patient and public involvement and design research to examine gaps in breast-cancer information.
Case study
This Masters project investigated information deficits experienced by breast-cancer patients in Ireland, with funding from Breakthrough Cancer Research.
We set out to identify information gaps from the patient perspective and reviewed the usability and usefulness of information on cancer-charity websites.
The mixed-method study used ten semi-structured interviews and three workshops, combining Participatory Action Research with design-thinking tools.
Thematic analysis, competitive benchmarking and usability testing showed how poor alignment with patient mental models can intensify information gaps.
Abstract
An Investigation into the Information Deficits Experienced by Breast Cancer Patients in Ireland
Project description
The Information Deficit is one of the top five unmet needs facing cancer patients in Ireland. Patients who feel more connected to a support system are more likely to know the signs of disease, understand information and remain engaged with the healthcare system. The information needs of breast cancer patients do not significantly decrease over time, but the type of information they seek does change. There is a growing need for better information sharing and care coordination.
This mixed-method study investigated information deficits using pragmatic methodologies through qualitative and quantitative participatory action research. Data was collected through ten interviews and three workshops. Design-thinking tools and thematic analysis highlighted key themes in the research.
Project objectives
- Create a design report presenting data gathered through desktop research, interviews and workshops.
- Create visual artefacts that reflect the findings in the design report.
Personal objectives
This final MA project provided an opportunity to integrate design and academic skills through a research topic I am deeply invested in. It also enabled me to develop expert knowledge and transferable skills relevant to my professional development.
Project outcomes
Insights
- Nine key themes identified breakdowns in communication that create fear and exacerbate mental-health issues related to a cancer diagnosis. These breakdowns significantly affected the development of relationships between patients and practitioners.
- Navigating cancer information online can increase feelings of frustration and disillusionment and expose patients to misinformation.
- Participants considered more than half of the content found on Irish websites too basic. The UX and UI of Irish websites performed poorly, particularly when compared with their international counterparts.
Conclusion
There is a mismatch between the information given to breast cancer patients and their ability to process it. A better understanding is needed of how information deficits occur and how patients form mental models. Better UX and UI design would improve patients’ experience of, and satisfaction with, cancer information websites in Ireland.
