Thoughts from The Mayor of Worldwide Breast Cancer

Mapping the Journey of The Worldwide Breast Cancer Project

Archive for breast cancer

Technology Partner Wanted

It has been a crazy but wonderful year. I’m just weeks away from finishing my PhD thesis, am starting a new job in September at a university in London, and have a whole new set of plans for expanding Worldwide Breast Cancer.

For the past four years, I’ve been researching how visitors have been using worldwidebreastcancer.com. I’ve learned what people are searching for, what pages are the most popular and how it could be designed to make it even better. Over 50,000 people have been educated by the website so far, which is incredible and I want that number to grow even more!

Nearly every week I receive an email from someone who has been excited about my work, organizations that want to use the posters and people who are running events. You truly inspire me with all the work you do! I’m so lucky to be part of such a meaningful worthwhile cause.

I’ve thought of all sorts of options to build the website as a step to turning it into a real resource for people: using my savings to pay for someone’s time, looking into student volunteer programmers to help with parts of the coding of the website, running a wordpress event to code the new site, etc. After some talks with some real pros in the area, I’ve come to the conclusion that what I really need is someone who is brilliant at all sorts of web development stuff that is able to donate their skills as a partner in the project because they are passionate like me about spreading awareness. Someone that I can collaborate with over the long term to really make it succeed. The plan is to turn WBC into a global organization and attract funding to expand its efforts. Could you be the partner I’m looking for?

Here’s the kind of skills I’m looking for:

  • Someone who is really passionate about breast cancer.
  • Someone who is looking for a long-term rewarding project and has the time to donate the odd hour or two a week.
  • A fun, collaborative person who is creative and up for pushing the boundaries of web media and likes to expand their knowledge base.
  • Someone who can turn a psd file into a robust WordPress template, with all of the standard compliances using CSS, php, xhtml.
  • Ideally someone who can also design a mobile version of the site, further down the road.
  • Social media integration.
  • Experience in building a multiple language website.
  • Good at communicating.

This post would also not be complete without a big thank you to Trevor Davis, who for the last four years has been so good to volunteer his time and passion to building the website today. Without him, I would not have been able to reach the people I have, thank you Trevor! And congrats on your wedding!

Also, Andres at CartoSoft is a star. He was able to make a google map of breast cancer screening centers in the US and UK. I spent a month validating each of the 2,000 addresses (phew!) and he took the design and database and turned it into a very handy resource. If you haven’t seen the breast cancer map already, have a look!

If you are interested in joining the Worldwide Breast Cancer team, please send me an email to: mayor *at* lemonland.org

Key words: web developer wanted, wordpress, css, breast cancer, php, web programmer

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 Del.icio.us 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.

New Signs of Breast Cancer Poster

After celebrating a birthday yesterday (which funny enough is the same as WordPress’s birthday!), it’s back to work. So, I’ve created a survey designed to assess if my *new* breast cancer poster is communicating correctly. This is an interesting experiment, because it is taking visuals that communicate, and then seeing what the verbal interpretation of them is. I have a dilemma with this, as it may not matter what some of these things are called, as long as people are able to see the signs and recognize them if they see them for themselves, no matter what they call them. But that is the complication with working with visuals, in the end it usually comes down to the text than can support them, especially in the academic world!

But this exercise has helped me redesign aspects of this that I thought were weak without the text descriptions next to them. Knowing that these are tested without the descriptions has motivated me to critically analyse each of the signs and make them better.

So, take the quiz if you are so inclined, or get your friends to do it. It takes 5 minutes!http://lemonland.signsquiz.sgizmo.com

The honeymoon is over, writing a dissertation

It’s true, I got married last month to a wonderful Brittish man. I met him while living here in England studying for my PhD over two years ago. That’s my little personal side-note to you.

This week has been filled with writing my dissertation and putting together images and research that I’ve been gathering for the last 2.5 years. I have a lot of work ahead of me, but it is good to be able to tie everything together and make more sense of all of the pieces!

And, I wanted to thank all of the people that comment on my blog and wish me well. Sometimes I think that I’m doing this little project without influencing anyone, so it’s good to know that there are some people out there that do like all of the work I’ve done so far! Thank you. šŸ™‚

Today I have been searching blogs for mammogram experiences, cataloging words people use to describe their screening. The consistent messages seem to be for those…

antipating their first mammogram: “scared”

after their first mammogram: “It was uncomfortable, but not as painful as I thought it would be.”

anticipating a 6 month follow-up appointment: “Iā€™m not nearly as worried about the mammogram as I was before.”

This is just an initial survey, I hope to look into this message further. The reason being is that some are not recommending yearly mammograms for some people because of the anxiety and stress these appointments make according to a few good sources.

So my question would be, “Could a nice, friendly designed information packet for your first mammogram experience help a patient be less anxious or scared?”

Hey, why not? šŸ™‚

Top 20 Winners announced tomorrow!

Thanks to everyone for voting for my map mashup! The top 20 winners will be announced tomorrow morning at 9 PST. I’ll let you know what happens!

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! šŸ™‚