What You Won’t Learn From the SXSW Headline About the Cancer Moonshot
There’s so much more to the SXSW story than what you will read in the headlines. Yes, the key takeaway is still we need your help, but so much more is being done behind the scenes than you would expect, and it should make you want to do something — now! Why? Because the pace is exciting and reaching the goal means thousands of lives will be saved. Don’t you want to be part of that?
To really be relevant in this Moonshot effort on finding cancer cures, you need to know exactly what is going on, and a nice little blip from SXSW isn’t going to tell you that. You need to dig a little deeper to see the real action, so that you know ways to help get real results. Friends keep sending us the Macworld article so let’s look at that article a little closer.
First of all, they quote former VP Biden as saying, “You’re the future. You can make a gigantic impact.” We are in 100% agreement on this. Now more than ever, individuals have a real voice and can make a huge impact. Talking about the right things on social media, supporting events and projects that directly impact the drive for a cure, making sure your personal data is used in ways that matter — these are all things that individuals can do, regardless of their occupation or knowledge base.
Biden was also right that hospitals are only just now starting to share their data in large scale efforts, but the project we’re supporting, Cavatica.org, has been in the works for years. A small group of foundations and hospitals came together to share data long before the words “cancer” and “moonshot” were put together. That small group of four hospitals asked for funding from local foundations and got it. They built an infrastructure that could share both clinical and genomic data, and they asked others to join them. Over time, other hospitals and foundations joined the effort and there are now 15 hospitals in the US and around the world who are sharing their most precious brain cancer tissue and its associated data. This model is scalable to include other types of cancer and disease, and in fact, is already tracking many different non-cancer conditions.
The Macworld article quotes Biden as using Facebook-type algorithms as a potential way of diagnosing cancer, but it overlooks the fact that those algorithms need data. You need hundreds, if not thousands of genomes that you can readily access for the algorithm, and then you need tissue samples grown out into cell lines that you can use to test the data from the algorithm. That’s when you start to get answers you can use in a clinical setting.
Cavatica is the place where people who want to write algorithms can go to get the data they need. This blog post by Hope Through Hollis illustrates how it is being used to make a difference for kids with DIPG.
The Macworld article goes on to say that electronic medical records have moved data from paper to the cloud, but not in truly meaningful ways. Most of what we think of as “electronic health records” are really little better than PDFs (non-interactive documents) stored in the cloud. What we need is live access to a single record for patients that can be accessed wherever that patient is treated. That is the model they are trying to achieve through Cavatica. (The primary focus on Cavatica has been research, and the ability to empower clinical data is still being fully activated.)
Cavatica is designed to let a patient’s data move seamlessly from the clinic where they get their treatment, to a researcher in a lab that may be halfway around the world, and then come back to that exact patient with meaningful data that can impact their treatment. I’ve talked to researchers who have used Cavatica — from hospitals like Children’s National Medical Center in DC and UCSF and they agree that this is an amazing resource, the likes of which they have never had access to before.
There is no big PR company being paid to tell you about this. The money raised is going straight into the project. The doctors and scientists are dependent on foundations like us to help raise the money and spread the word. So you may not see a flashy commercial with a child in treatment — instead, we are actually funding the child in treatment. Want to make a difference? Do something to fund Cavatica. It’s our single best effort at putting an end to cancer. Want to learn more? Text the word “Cavatica” to 51555. (Standard text messaging rates apply.)
