Thoughts from The Mayor of Worldwide Breast Cancer

Mapping the Journey of The Worldwide Breast Cancer Project

Archive for identities

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.

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.