An Investigation into the Information Deficits Experienced by Breast Cancer Patients in Ireland

Patients who feel more connected to a support system are more likely to know signs of diseases, better able to assimilate information and less likely to drop out of the system. The information needs of Breast Cancer patients (BCP) do not significantly decrease over time, however, the type of information BCP seek does change over the cancer trajectory. There is a growing need for better information sharing and care coordination for BCP. Their information and support need remains high throughout diagnosis, treatment, and post treatment.

This ontological and ethnographic study took an empirical-analytical approach using pragmatic methodologies and participation action research. This mixed method exploratory research aimed to explore the main aspects of this under-researched problem by using qualitative and quantitative methods. Data was collected through interviews and workshops which used collaborative design thinking tools. The DT tools enabled dynamic interaction between researcher, patients, and stakeholders and espoused a PPI approach. Ten interviews were semi-structured and included a mini survey component. The three workshops employed a Design Thinking approach and used Design Research tools to gather data. The study focused on the specific information deficits experienced by participants and aimed to highlight the issues that contribute to these gaps. The final design report presents the gathered data from desktop research, interviews and workshops and a poster was created to reflect findings in the design report.

Nine Key Themes identified breakdowns in communication that create fear and exacerbate mental health issues related to a cancer diagnosis. These greatly impacted the development of patient and practitioner relationships. Navigating cancer information online can lead to further feelings of frustration, disillusionment, and exposure to misinformation. Over half the content found on Irish websites was considered too basic by participants. The UX+UI component of Irish websites performed poorly, and this was exaggerated further when compared to their international counterparts. In conclusion, there is a mismatch between the information given to BCP and their ability to process it. Better understanding is needed of how ID happen and BCP mental models. Better UX+UI design would increase BCP satisfaction and experience of Irish cancer information websites.

A poster presentation was submitted the 58th Irish Association for Cancer Research Annual Conference in March 2022. Further analysis from workshop A and B will be added to create Part II of this Design Report. This work commenced in June 2022 as part of a Research Assistant position at UCD.