BCAN Focused on Building a High-Energy Community for Bladder Cancer

Educate, engage and energize — those are the three main verbs and goals of the Bladder Cancer Advocacy Network’s (BCAN) first ever leadership summit.

The two-day summit, which will take place in Rockville, Maryland, from October 14-15, will feature sessions on navigating the health care system, learning more about clinical trials and research updates, and an awards ceremony to recognize volunteers that go above and beyond the call of duty.

Could you provide an overview of this summit?

To learn more about the summit, CURE interviewed Stephanie Chisolm, BCAN’s director of education and research.We had heard from some of our dedicated volunteers who said they'd like to be better trained and be able to do more. We thought about some of the areas where we could help them the most and how we could provide a sense of community. We decided that a leadership summit would be a great way to bring together key people, and now we've got a really good two-day program planned.

We're going to have some community building and then participants can choose from three "BC-A-N How-To Academy" workshops — communicate, activate and navigate.

'Communicate' is going to focus on raising awareness and spreading the word about bladder cancer in a digital world. We want to make sure people know how to use Facebook and Twitter and can reach new people wherever they might be online.

'Activate' is more about practical tips to support and influence bladder cancer research and legislation. This might be even about advocating for bladder cancer at a big institution where you get your care — that's something patients need to know about.

'Navigate' is about learning how patient navigation could work better. How can our volunteers help patients in an increasingly complicated health care system?

We know that a lot of our advocates are excited about changes in bladder cancer research and treatment, so we have a few medical experts coming to the summit to do an informal panel on bladder cancer research.

You mentioned a "sense of community." Why is that important in bladder cancer, and why is it something you want to grow?

We'll conclude with an advocate action lunch to give people some direction and ask them where they can take these new skills to feel good about the work they're doing with BCAN and to help us achieve our mission. I hear it from patients all the time that they didn't know they could get cancer in their bladder. People have no clue that it's the fifth most common cancer. Many people also tell me that they didn't know a relative had the disease until they were diagnosed themselves. It's cancer, but seemingly no one talks about it because it has to do with their bladder.

Besides the sense of community, why else should people attend?

The fact that our volunteers are from everywhere — we wanted them to feel a stronger sense that they were connected to us but also connected to one another. We felt it was time to gather everyone together — we're hoping to get 100 people there — to build these connections.Learning about research is something that's attractive to a lot of volunteers. The people we have coming are some of the top experts in the country. We also have a lot of folks that are really good with advocacy but they want a little more training with communicating online.

People also want to learn about how they, as a survivor, can help other survivors. It's a life-altering disease. How can you help people navigate through some important decisions and be satisfied with their treatment options?

What do you hope to achieve at this summit?

This whole summit, too, gives us a chance to celebrate some of our key advocates and talk about their great projects.We hope to have a lot of people there and to get more people to join our key efforts, such as the "Survivor 2 Survivor" program. We want to give people the tools so they can share their experiences and help others, for example. These people don't want other patients to have to stumble through the way they might have, because they didn't know BCAN existed or that we had great resources. It's like a secret decoder ring: OK, you've got bladder cancer. Let me tell you how things work and what you can expect.

We want people to be better and stronger advocates so they feel confident to speak up in their communities, with their legislators and with their doctors.

This is an exciting time for research, too. It's never a good time to have bladder cancer, but for once, it's nice to see treatments really progressing. And we're keeping our fingers crossed that we'll get more drug approvals in the next 12 to 18 months.

Editor's note: To learn more about the summit or to register, click here.