Thoughts from The Mayor of Worldwide Breast Cancer

Mapping the Journey of The Worldwide Breast Cancer Project

Archive for tools

My new purchase: 9,000 mammography centers

That’s right, today I bought 9,000 fda approved mammography centers from the US Government Information folks, and it only cost $85. I’m hoping to put them all on a map for you real soon!

It’s getting exciting!


Google Health, now available

For a minute I thought I might be out of a job and my breast cancer map made redundant when I saw the new service by Google, “Google Health”. But then I tried the doctor search tool and discovered the breast cancer map is still oh so needed (click image to see at a decent size):

But a collaboration with this tool would be amazing, don’t you think? They have an open API. Anyone know who I would talk to to get the ball rolling?

Beehive Model for Online Social Activity

Here is my latest poster as part of my PhD dissertation on breast cancer communication. It is a social online model that I am developing based on how bees work in a community. This is also based on the chart published by Business Week last year.

Here is what I’ve found so far:
People need to be motivated to share their bookmarks to benefit others to complete the cycle of gathering and sharing. For example, a woman with breast cancer gathers a lot of information online that helps her make better health decisions. She is motivated by needing that information to save her life. But that information is usually not shared efficiently, or at all.

If she has no simple way of sharing this information that she’s gathered, it only benefits her. Even if she is motivated to share her knowledge with others, she may not share it because she doesn’t know how. This could be easily remedied with an aggregator like that was specifically for a breast cancer community. But for now, cross-pollination is only happening with the few and rare expert worker bees and Queens.

What if we could do more than share links, but categorized and searchable links through social bookmarking? Like with Deligoo or Simpy? And people could enter that breast cancer library through anyone’s blog widget? That’s what I’d like to do. So if you’re a programmer and this scratches an itch for you too, say hello. Or if this is already out there and I’m just in the dark, hey really say hello.

So until people are sharing their resources, not a lot of cross-pollination is going on and websites decay from inactivity and bees go hungry. That’s the theory anyway. I say let’s do more than fill our baskets, let’s share them.

Click on the image to see it full size.

How to vote for breast cancer

I’ve made a mashup project for my phd breast cancer work and need votes to get it built by a group of geeks who feel democratic.

If you have 5 minutes to spend, I’d really appreciate it if you could take the time to vote for it before Friday afternoon, here’s the details:

Ok. Let’s rock the vote!

1. Please register and log in to the NetSquared site by Thursday, and pick a user name for a new account. They will email you a password. (don’t worry, they won’t spam you, these guys are good guys)
2. Registration has been automated for the duration of the voting process. If you did not receive a confirmation email, please check your junk mail.
3. Click the Projects link to review project proposals.
4. Click on my Worldwide Breast Cancer Map project in the list and click “add project to ballot” at the top of my project page.
5. You must choose at least 5 (and up to 10) of your favorite projects.
6. You may only vote once for a project.
7. Once you have chosen the 5 projects you want to vote for, please review your selection.
8. Submit your ballot to cast your final votes. Once you SUBMIT, that’s it!

They request that you vote for 5 projects. I think it is to help get more than one project to stand out. So, add 5 projects to your ballot and then submit them. The voting ends on Friday at 4pm Mountain Standard Time. There are some cool mashups out there!

Thanks! Email your friends and have them vote too! 🙂

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.

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.