Thoughts from The Mayor of Worldwide Breast Cancer

Mapping the Journey of The Worldwide Breast Cancer Project

Archive for July, 2007

The Breast Cancer Map

An example of information and design coming together online is Google Maps. By simply typing in an address, one can drag the map around with their mouse moving up or down, zooming in or out, seeing the landscape as a network of streets or a satellite image of fields and rooftops. It is clear to see how everything is connected. Google has made their map services available to developers to make their own applications with their map tool. Now people can put themselves on the map, mark out a great place to get sushi, or share their favorite jogging route. They are also possible to do things like find the nearest breast cancer treatment clinic, find other people with their same type of breast cancer or locate the place for the next breast cancer run or research conference near them—if such a web application were to be developed.

The map is a simple way to help people connect and find resources close to them. It opens up communication between people who sometimes feel isolated. A map like this could be a life-saver and bring many people and services together.

The breast cancer map would give people the option to place themselves anywhere on the map. This can be their address, a nearby park, or if some prefer, the “anonymous” area. Any information given is completely voluntary, and users would be guided on best practices for security.

When members are logged in, they can sign-up for an event like a run with a single click, or register their interest with a clinical trial that they qualify for. Or if they want to create an event, they can advertise it here.

Breast Cancer Map

Here the map shows an example of what type of info would be visible. A GP clinic is in the centre of the village. A charity run is by the river. A chemotherapy facility is in a neighboring area. By clicking on any of those icons, a viewer can find a phone number for the clinic and make an appointment, find directions, or go to their website.

Other items not pictured would be researchers, hospitals, male patients, and those who have had a history of breast cancer to name a few.

Think how easy it would be to spot areas of a high concentration of breast cancer, and what that would mean for research!

How to reach those not online: An Online Educational Materials Design Tool

The internet is brimming with information and tools are being developed to create online resources. Yet there is this gap between the information and the unreached. Luckily, there are some ways of getting information out of the computer. Beyond word-of-mouth there is the printer, paging information to a phone, and a fax machine are some ways. A tool that made it easy for a person to create visually engaging breast cancer materials, that can then be printed at home, in the office or at a press would bridge this gap. By choosing a topic, images and a list of available text in several languages anyone can become an educator. The materials could be a card, a poster, a pamphlet or postcard. These could be personalised to include the recipient’s name, locations of the nearest health facilities and adapt the information to their risk type and country. Hand-delivered or mailed, these could reach the previously uninformed. Gifts of education, made for them by a friend, family member or physician. It could be something as informal as: “Hey Grandma, Check Your Breasts!”. Or something done by a nurse for a patient: “Mrs Smith’s Mastectomy Recovery Card”. A web tool that is able to help a health educator, medical personnel or the lay public to easily create attractive, informative and up-to-date educational materials would be a highly valuable tool. And of course, available free of cost.

How Design can help

Design is the intentional organisation of matter. With good design, it can be easier to navigate a web page, or understand information. Here is an example illustrating the principle:

How many dots?

Example A requires each individual dot to be counted. Example B communicates at a glance because of its clear organisation. This is one example of design in using grouping, symmetry and consistency to show amount. There are many other ways to design information to show other types of information.

So, with some intentional organisation of breast cancer information, comprehending the issues can become much easier. Designers up to this point have not played a major role in the communication of breast cancer information, other than in advertising and marketing. That is why I’m looking at design’s impact on breast cancer and using it to improve communication.

Who would benefit from a Global Breast Cancer Network like Lemonland?

An online social community would be a big asset to the work already happening in breast cancer. There are five types of community members: Researchers, general public, patients, medical personnel and organisations.

Researchers need information to fuel their work. Having an access to a global network that can provide information on aspects of their research can make an impact. A researcher can join the community, place themselves on the map and find other researchers who are working in a similar field. They can then access the community by asking questions to a specific type of member, whether it be a patient, the public, a physician or another researcher. They can find statistics donated by patients in the community, and easily find cancer registries through a list of sources. Instead of hunting for information, they can focus on using and analysing information. Being able to share their research with a large audience interested in their discoveries can also be a good thing for a researcher. They can add information to a central breast cancer library and retain ownership of their work.

General public are people who have never been diagnosed with breast cancer. They might be looking for information for themselves, or someone in their care. They can join the community, put themselves on the map if they like, and find events or fundraisers or studies they can participate in. Registering interest for these events or studies could be done with a single click and sent to the sponsoring organisation. Designing materials for themselves or a friend, they can share them with the community and store them online. They can also assess their breast cancer risk, or hold an education party by printing out an education kit. They can collect information they find useful online about breast cancer and add it to the central library, and their list of resources. They can also easily find clinics near them, as well as use a calendar to keep track of appointments and remind them when they are overdue for a check-up. They can bring information about themselves to their GP to add to their patient chart and help them feel more comfortable in talking with their doctor about concerns. A key public group that would be targeted with this project would be elderly women over age 67 who are at the highest risk for breast cancer, but are no longer invited for NHS screenings. In a survey last year, over half believed their risk was less than 1 in 100. The reality is 1 in 8. This misconception has led to women not reporting symptoms to a physician and not scheduling breast screenings. (8)

Patients present or past, can benefit much from joining the community. By submitting information securely to a cancer registry, they can input information about their cancer, submit images to an archive and give insight about their treatment. They can also view a map of other patients around the world who may be newly diagnosed just like them, with the same type of breast cancer or treatment. They can discuss, support and aid eachother in finding information or getting the best care. They can also easily find trials they are eligible for and help family or friends understand their journey through providing materials or information that explains simply what is happening. They can put appointments on a calendar and track their process. They can form support groups and/or join existing ones helping to strengthen others who may come after them.

Medical personnel range from a GP, to a specialist, a health technician or a health educator. They can put themselves, their services and their clinic on the map. They can track a patient’s progress by invitation for a patient. Read the latest research to aid their decisions; access cancer registries, image archives and trials to help them in diagnosis and treatment options. They can also create materials that help a patient navigate through screening or treatment, or educate the public about programmes or services.

Organisations can be charities, hospitals, or groups. By joining they can add events and services to the map and reach their local audience about their cause and recruit members. They can create materials online with their logo and extend special invitations to the community. They can create a presence in the community that engages and informs. They can be seen working in the public alongside other organisations without worrying about corporate sponsors clashing.

Why focus on Breast Cancer education?

Breast Cancer education is an important issue. One in ten of all new cancers diagnosed worldwide each year is a cancer of the female breast, and it is the most common cancer in women in both developing and developed areas. It is also the principal cause of death from cancer among women globally. (1) According to the Office for National Statistics, breast cancer is the most common cancer in England. (2) Although there are many campaigns for breast cancer “awareness”, there is little public knowledge on the signs of breast cancer, the screening process or where to go for support or reliable information when diagnosed. The basis of this project is to change that through a global online community.

Since 2001, I have been studying the issue of breast cancer education through the eyes of a designer, and a granddaughter of two women who died from the disease. I had heard that having a family history increased my chances of getting breast cancer, so I went to an award-winning cancer library to find out what I could do about it. I thought it would be a simple process of walking in, picking up a pamphlet and being on my way. That was far from the truth. As a 21 year-old woman, no one knew what to tell me. They pointed out several websites and gave me pamphlets aimed at middle-aged women. Not one resource gave me the full picture. I heard about lumps, but didn’t know what they felt like. There was a lot of conflicting information, and it was difficult to know which sources were accurate and which were not. “Did underwire bras really cause cancer?” I walked out with more questions than I had when I entered. This is a common experience for many seeking breast cancer information.

However few actually “seek” it out. For me, two women had to die before I was wanting to trek through the gray pamphlets and websites with dull or graphic medical illustrations and complicated terminology. Medical brochures, leaflets and pamphlets in general are not engaging. And many websites are buried under the weight of so much information it can overwhelm even the most diligent seeker. As a designer, I could see that a big change could be made. Bringing the information to those who were afraid, embarrassed, uninterested or overwhelmed by making the presentation attractive, complete and easy to share.

I observed women being screened in a women’s health clinic, and in an imaging center for several months. I gained some interesting insights: physicians don’t know everything, lumps are hard and not squishy, patients are handed from one step to the next without being given an overview, and women have many reasons for not being more active about their breast health. I used this insight, along with information I had gathered from various resources to produce a series of breast cancer screening posters called Lemonland. The images were of lemons, photographed in a way that resembled breasts. This made the message friendly, memorable, and avoided censorship in public while allowing the information to remain specific. The key posters showed the 12 signs of breast cancer and the anatomy of a breast. The reaction from the public at my exhibition was very positive. Several wanted to know how they could get involved, if they could make cards for their friends and host their own “Lemonland Party”. The city’s health department wanted to use my images for a campaign and I designed an education booth for them. The results were very good.

I started to realise however, that many people were still not being reached. Those who were not comfortable speaking english, or did not attend health fairs or visit their GP, would never see this information. I moved to England and began my doctoral research studying how to globalise the message of breast cancer using visuals. I assessed breast cancer organisations in English-speaking countries, looked at their educational materials and strategies, and analysed campaigns. I found that most campaigns were targeted very specifically to certain groups, and when that campaign went outside that group, the campaign weakened. This was for several reasons: Different countries have different screening recommendations and programmes. Age, gender, family history and other factors all contributed to risk, which also changes recommendations for individuals. Most breast cancer educational materials were divided into race. This required having new images to represent those individuals for each campaign. Or having materials with many images of different women to reflect the whole audience, leaving little room for visuals to represent the actual message. Often educational materials for english speakers, were more well designed than their foreign-speaking counterparts. This creates a visual segregation immediately, as almost if to say, “The educated english speaking population is worth the illustrated pamphlet, your group is worth a few paragraphs of text.” That of course is not the intention of any breast cancer campaign, but because of tight resources, the minority groups have the minority of the information, despite the fact that the information is available in abundance.

Is what I’m reading right or wrong? A Breast Cancer Guide

There is a lot of information available online about breast cancer, but it’s a bit of a mess! Scattered all over the internet—how can you tell which information is credible or rumour? Current or old? Have the statistics been used correctly, or inflated to cause a stir? Wait, we’re looking for answers not more questions! sigh

So what if we could bring experts together to fix this? (Sorry last question) By building an online tool, a breast cancer encyclopedia of sorts, this can help. Researchers after completing a study can add their results to a Breast Cancer Guide, update old definitions of terms relating to breast cancer and share their knowledge. Here is an example of how this would work:

Patient A is on a particular medication and has looked online for more information. What is found is a statement made by Patient B claiming that 50% of people on this medication have kidney failure. This statement can be pulled into Lemonland where the guide can highlight terms available for reference. In this case, “kidney” and the name of the medication would be highlighted. With a click, Patient A could read definitions of the medication, see the average dose of a patient with their similar symptoms, and see a list of studies about the medication. Looking for “kidney” in these studies would show if Patient B’s claim was founded or not.

Patient A would be able add a link to Patient B’s statement, leaving a legacy for the next person to find the information. A Breast Cancer Guide would help people to sort fact from fiction and look at information in an informed way. Providing better treatment and communication with physicians.

A magic icon maker

Today I signed up for a new service that asked me to upload a photo for my profile. Thinking about this I thought “wouldn’t it be great if my photo’s colour was adjusted so that I could match the look of the whole website?” This got me thinking that it might be a good option to brand images that people upload for their profiles on Lemonland to fit with the site. I’ll upload some image tests of this later on.