Abstract P5-09-05: Communication design toolkit for metastatic breast cancer patients and their health care professionals
Authors: Beaumont C , Crawford-Gray K 
Published: May 2016

Abstract
Worldwidebreastcancer.com is an online resource designed to increase understanding of the basics of breast cancer detection through good design. Tools are used in 8 countries by 500+ advocacy groups reaching 1MM+ people in English, Spanish, Turkish, Arabic, Japanese, Gujarati and Samoan.
The Metastatic Breast Cancer Alliance (MBCA) is an advocate-led coalition aiming to transform and improve the lives of people living with metastatic breast cancer (MBC). Different from early breast cancer, MBC is not curable and is the cause of virtually all breast cancer deaths; ∼40,000 die annually of MBC. People with MBC are always in treatment, switching drug regiments as their disease progresses. Survival and quality of life depends on patients' treatment decisions; yet many do not have a high level of engagement during in-office conversations with their oncologists.
Objective: Develop a visual tool kit to help MBC patients, with little or no engagement in a treatment decision-making process, communicate on equal ground with their health care professionals (HCPs) about their diagnosis, treatment, and quality of life. Low literacy rates, fear of cancer and the cultural taboos associated with breast cancer, create hurdles difficult to overcome. Despite a large number of education campaigns, none offer a multilingual, multicultural solution leaping these hurdles for MBC patients.
Methods: A USER Design Thinking Model Framework (Beaumont, 2011) with 4 cyclical phases: (1)USER: understand the needs of patients and stakeholders; (2)SYSTEM: understand the communication along the patient pathway; (3)ESTABLISH: determine patient centered needs; (4)REALIZE: develop physical tools to address needs and, going back to the USER phase, test with patients and stakeholders, evaluating their usefulness along the patient pathway to determine recommendations for the next round of improvements. Tools are being developed at a National Cancer Institute, before being trialed in two different cliniacal settings.
Results: Based on this project's ground breaking Stage 1 targeting women with early stages of breast cancer, we anticipate the results will show that visual metaphors overcome health literacy and communication issues for MBC patients not engaged in treatment plans. Stage 1 results showed the majority of participants (n=67) were able to interpret visuals accurately without the use of text in terms of symptoms (65%) and anatomy (86%) of breast cancer. Health practitioners using the materials reported the images were effective in communicating symptoms.
Conclusion: A visual approach to improving communication between MBC patients and their HCPs seems possible based on positive results of patient interpretation and practitioner feedback from research and testing with early stage breast cancer. Visual tools help HCPs engage patients with information to enable them to understand their disease, and goals and nature of treatments, so they can make informed decisions right for them.
1. www.mbcalliance.org/
2. Pfizer Oncology. 2014: Breast Cancer: A Story Half Told, p.9. www.pfizer.com/files/news/Statement_ofNeed.pdf
Citation Format: Beaumont C, Crawford-Gray K. Communication design toolkit for metastatic breast cancer patients and their health care professionals. [abstract]. In: Proceedings of the Thirty-Eighth Annual CTRC-AACR San Antonio Breast Cancer Symposium: 2015 Dec 8-12; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2016;76(4 Suppl):Abstract nr P5-09-05.