This is happening NOW. RIGHT NOW!
Join me on the cutting edge of cancer knowledge – accumulating what patients know! I’ve ranted and raved countless times about the lack of cancer patient data. I’ve talked about how little we actually know, and the many obstacles to knowing more. More often than not, I refrain from sharing my frustration – and more than that, how deeply it scares me to know so little. Today, all that changes.
If you are connected at all with the world of cancer – patient, caregiver, friend, supporter, physician, researcher – you are probably well-versed in the frustration and anger that results from a lack of information.
- When you are first diagnosed you want to know who else is living in this new, unwanted club. Who are they? Where are they? How are they doing?
- When you prepare for surgery you want to know the kinds of outcomes others have had, which procedures are most effective for your kind of cancer.
- When you make decisions about chemotherapy you want to know what side effects you might expect – and certainly who has benefited in past. And who hasn’t.
- And let’s be really honest – you want to know how long others are living, and where the longest living patients are, how they are treated, and how much they are just like you.
These are just a handful of the many questions we think about, and not just when we are new to cancer. The pop up when there are changes in what we know, when we see our doctors – and in the middle of the night.
We also know that information does not flow easily or quickly. Each of our doctors, each of our labs, each scan, each report, each test holds information – and unless the information is exceptionally important, it sits in our medical record. That’s it – it just sits there. Not because no one cares, but because until today there was no where else for it to be.
For those dealing with metastatic disease the picture is even more grim – we are generally not even counted, and so all the existing data is culled together from disparate sources, much of it conjecture.
- What if all of those layers of data could be put together, and put to use?
- What if you could easily, safely, confidentially share what you know and then learn how it aligns with the experience of others?
- What if you could ask the questions you want to know, and millions of others could respond?
- What if information were available 24/7 – as new information becomes available, in the middle of the night, or even at your doctor’s office?
- What if the collective wisdom and experience of cancer patients from across the globe was at your fingertips?
As of today we begin to build just that – the world’s largest database of cancer patients. The objectives of CancerBase are to collect data, share information, ask questions and provoke learning.
CancerBase was built by patients, for patients. It is has an honor to represent the patient voice in the process of developing the community, to ensure our needs are and will be met.
The success of CancerBase starts with us. When you launch CancerBase you will be asked to login then share your answers to just a few questions. As our community grows, there will be more feedback and more questions.
Join for yourself and share with others. Tell your friend. Help your grandparent sign up. Share what you know of those you have lost. Each and every one of us has information. CancerBase means it no longer gets lost, but instead gets elevated, leveraged, in a way that benefits us all.
And please, if cancer matters to you at all, share this one!