CancerBase: Building the Global Cancer Map and Community

Lori Marx-Rubiner
Jun 29, 2016 · 4 min read

by Lori Marx-Rubiner & AnneMarie Ciccarella

The cancer community is all too familiar with challenges — they exist at every turn. There are high-risk mutations, chemo-resistant tumors, unclean margins, mutations of unknown consequences, and ultimately death, just to name a few. Just like HIV, heart disease and diabetes, it is time to render cancer a manageable, treatable, largely chronic disease. There are a growing number of treatments for cancer and much research but the pace of all of it is painstakingly slow. Vice President Joe Biden and the Cancer Moonshot have issued a challenge of their own: double the pace of cancer research to make ten years worth of progress in the next five. Each and every one of us has been challenged to figure out how we #CanServe.

As patients, we are clearly and resolutely being offered a voice, and it is upon us to step up to the challenge, to help figure out what we need to know, and help find the path. There are countless questions, such as:

Where are the Data?

In today’s world of high tech and lightening speed of information exchange, why are our data about cancer lagging so far behind?

At today’s pace we will wait years, perhaps decades, until eMRs can be linked and the cancer data collected all in one place, then used to discover meaningful critical information. All of this will certainly help the practice of oncology with profound benefit on cancer outcomes, but it still won’t necessarily help us to understand our individual cancers. Newly diagnosed patients lack the information they need to ally fears and anxiety that comes with a cancer diagnosis. Continuing patients want to know more about various treatment options. And those who move beyond treatment want to know what to expect for their futures.

But, we can change the world today.

Yes, today.

Right now our cancer data are scattered across the cancer care landscape and much effort is rightfully focused on breaking down these silos to advance the clinical care, establish roadmaps of the future and prioritize research. But there is also a real-time way of looking at these data if we utilize the one intersection where all these data come together — our personal knowledge of our individual cancers. Can we bring these data together?

It’s On Us

CancerBase is the tool we, as patients, have been waiting for. Perhaps its something we didn’t even realize we needed, but now that it is here, it will change the landscape entirely — and it will do so rapidly. Dreamt up by scientists, designed by patients, and developed by techies, CancerBase is all about us, the community of cancer patients. As we populate CancerBase, sharing the data of our personal experiences, we will learn together, adding our questions over time. Our data will tell our stories in millions of different ways:

“Nothing about us without us” is a common refrain in the cancer world. Patients frequently feel disempowered, even alienated, despite our very lives being on the line. We fight to make sure our voices are heard — from helping to set the research agenda, to policy and funding concerns, sometimes right down to our doctors’ offices. But we rarely actually participate with our own disease data.

Learning Together

When you visit the site you’ll be invited to answer just a couple of questions about you (or a loved one for whom you enter the data), and you’ll have a chance to share that information anonymously with others. The data you enter will be used to create your personal visual representation of your cancer timeline, and with your permission your generalized will be shared with others, without ever identifying you personally. As we have more responses, the tools will become more dynamic and the global map of cancer distribution will be enhanced. In the coming weeks we will start to add more questions — your questions. There’s a place right on the site to ask them. You will also be able to share your participation on social media — the more patients we have, the better our information will be!

There is an added bonus: CancerBase won’t just help patients. It will fill in countless gaps in knowledge through shared experience, allowing researchers to ask new, innovative questions instant access to the data. Their ingenuity will push forward even greater progress.

Most importantly, we as patients are at the center of this effort. Our data, we decide. We hope you’ll join us in answering the Vice President’s call. Through CancerBase each of us #CanServe, and together we will end cancer as we know it.

Cancer Moonshot℠

Read the stories of the Administration’s work to double the rate of progress toward a cure

Lori Marx-Rubiner

Written by

Wife, mother, daughter, sister, friend. Living with metastatic #BreastCancer. Change Agent. Speaker. Advocate. Blogging w/irreverence:

Cancer Moonshot℠

Read the stories of the Administration’s work to double the rate of progress toward a cure

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