Research process behind the 12 signs of breast cancer image
In developing the "12 Signs of Breast Cancer" image, seven approaches are used to identify, test and verify communication efficiency.
IDENTIFYING SYMPTOMS PROCESS
1. Desk research (starting in 2002 and continuing to the present) was used to gather a text-based list of symptoms from prominent English-speaking health organizations spanning a range of geographies. This lists includes but is not limited to:
- World Health Organization (Global) A B
- American Cancer Society (USA)
- National Health Service (UK)
- Europa Donna (Europe)
2. A media audit of patient-facing medical materials, websites and health promotions was collected and analyzed for symptom content including word descriptions and text (2002 - present).
3. A visual audit of images of breast cancer symptoms was conducted through a Google Image Search. This allowed the symptoms to be cross-checked against the text descriptions of the symptoms, so as to identify any visual aspects of symptoms that might not have been clearly identified in a text description.
At this point, a list of symptoms is compiled from the first three methods. The advantage of communicating through a visual format is that one can be incredibly detailed and communicate several concepts simultaneously without having to burden the reader. Since the image is intended to communicate with a global audience, and is able to communicate quickly because it isn't text-based, we do not have to reduce the amount of information given so as not to overwhelm the viewer.
Therefore, we do not determine which symptoms to include based on frequency of presentation in a given geological area. For locally based organizations, who are communicating via text, including multiple symptoms can be seen as counterproductive when educating the public. This would explain the reason why the phrase "and any other unusual changes" is often used in describing breast cancer symptoms by several bodies, indicating it is not an exhaustive list. Instead, we include a comprehensive array of symptoms to cover a variety of possible cases to help the maximum number of patients. Currently, there is not a study that has tracked the type of symptoms present at the time of breast diagnosis, nor are general health practitioners fully aware of all the symptoms to report on a patient record. This is a research area we are currently investigating.
4. Once the list of symptoms is compiled and identified, an academic literature review of the symptoms is conducted to verify each symptom and gather information to create a description of each symptom.
TESTING + ITERATION
5. As part of an ongoing process, we listen to feedback from patients as well as health professionals who use the materials in different parts of the world and update any improvements that need to be made to the image. When the image's popularity reached a global audience of over 200 million in 2017, we were able to connect with health professionals in more remote parts of the world that helped us better communicate the advanced presentations of the disease. Specifically, this resulted in visually singling out nipple changes, open sores and depicting "peau d'orange" with less emphasis on color change, and more on texture change.
6. The image is tested with patients without a text label next to each symptom to determine how it is being interpreted to assess communication accuracy. Read here to learn more about the outcomes from the visual communication research.
7. Medical members of our Advisory Team review the content of our work prior to publication.
COMMON QUESTION: ENLARGED VEINS?
Some symptoms of breast cancer are more clearly communicated in text descriptions than others. For example, a "lump" is well known, although not very well described in palpability. "Enlarged veins" is one of the lesser described symptoms of breast cancer and is usually included in general "other unusual changes" or "skin changes" categories. Yet enlarged veins can indicate a blockage in a blood vessel, that can be caused by a lump or increased supply of blood to the breast due to tumor growth (1) (2) (3) (4) (5) (6).
We have also had patients confirm to us an enlarged vein as a symptom of their breast cancer, as well as verifying through visual documentation and clinical presentation in peer reviewed journals (1)(2).
Note about translations of the "12 Signs of Breast Cancer" image:
When materials are translated, they go through a rigorous 3-step process, with a combination of three independent translators and lay public to verify accuracy and tone.