Crowdsourcing Pancreatic Cancer Information [Interview][Transcript]

anne_glauber_lets_winGuest: Anne Glauber
Presenter: Neal Howard
Guest Bio: Anne Glauber is a managing partner of Finn Partners and a founder of its CSR/ Social Impact practice. Her work has earned her national recognition for new communications models that mobilize private sector resources to address public problems. When she was diagnosed with stage IV pancreatic cancer she discovered information on treatments outside of the standard of care and created Let’s Win, a first-of-its-kind crowdsourcing platform that enables doctors, researchers and patients to share fast-breaking clinical information about pancreatic cancer treatments and trials.

Segment overview: Anne Glauber discusses the ultimate goal of “Let’s Win,” a first-of-its-kind crowdsourcing platform launched earlier this year to enable doctors, researchers and patients to share fast-breaking clinical information on potentially life-saving pancreatic cancer treatments and trials.

Transcription

Health Professional Radio – Pancreatic Cancer Survivor – Let’s Win- Crowdsourcing Pancreatic Cancer Information

Neal Howard:   Hello and welcome to Health Professional Radio I’m your host, Neal Howard. Thank you so much for joining us today. Our guest is Anne Glauber. Now, Anne is a cancer survivor. Specifically a survivor of pancreatic cancer, one of the most lethal forms of cancer with more than 53,000 folks being diagnosed every year. Now, about 75% of those who present with advanced disease are going to die within a year. Anne is a survivor and she’s here with us today to talk about her story, her diagnosis and the Let’s Win crowdsourcing platform that launched earlier this year that enables doctors and researchers and patients as well to find fast-breaking clinical information about pancreatic cancer. Welcome to Health Professional Radio, Anne.

Anne Glauber:   Thank you! And thank you so much for having me here.

N:   Thank you for joining us. You’re a cancer survivor. Many of our listeners are either cancer survivors themselves or are dealing with survivors as healthcare professionals. Now, you were diagnosed with one of the most lethal forms of cancer, that being pancreatic cancer. Talk a little bit about what were you doing and how you discovered that you had this disease?

A:   Well, I was living my typical normal life, working everyday, I had an just written a book, I was feeling absolutely fine and I happen to make an appointment to see a dermatologist. During my examination, the dermatologist put a mirror to my face and he looked in. He gasped and so did I because they were yellow, my eyes were yellow. And he stopped the examination and told me I should go to see my doctor to determine why my eyes were yellow. It turned out I had jaundice, I had a sonogram and then I had a cap skin and then I was given the diagnosis of stage four pancreatic cancer, which was devastating, devastating shock to me and my family.

N:   Were you able to just readily find out information about it and just determine make a firm decision as to what path of treatment to take?

A:   That was a really good question. It was extremely difficult to find information about what our next steps would be. We, like many others who get this diagnosis, my kids went on the internet and studied to take a look and what they found more than anything else was just horrific, horrible statistics about the disease that no clear information about who may be a pancreatic cancer specialist, what may be the latest scientific advances happening in pancreatic cancer, what were the top institutions, and what were perhaps new innovative treatments that could go beyond standard of care. It was extremely difficult for us to find information. We were lucky at the end because in our network of relationship, we found out about a leading pancreatic cancer specialists to I went to see in California. And then I also have a leading specialist in New York but the bottom line is it was extremely difficult to get this information when I was first diagnosed.

N:   So, between you and your support group being your family, and I’m sure many friends and possibly even co-workers, it was still that difficult with over 50,000 people being diagnosed each year, you’d think it’ll be a little be simpler to at least get some information tell you which way to go. Now, this difficulty, it led you to start the Let’s Win platform, it’s a crowdsourcing initiative. Talk about this initiative that you started.

A:   Yes, I stated the initiative along with my doctor, Allyson Ocean, to begin to share information about pancreatic cancer treatment that will not necessarily standard of care, but all science-driven that patients were using that were extending their lives. I felt that I had connected with two outstanding pancreatic cancer specialists who had developed a treatment for me that was working and that was effective. I wanted to share this with other patients, and I wanted to begin to educate and empower patients to find information, to educate themselves about options that would be available. So, Let’s Win put all of these information in one place. Patients write about their treatments that are different in standards of care and we have some amazing stories from patients on the site and other patients can respond and ask questions so it’s very interactive. We have an area on Let’s Win that’s focused on  promising science, where we highlight a research that’s going on, where we talked about, progress that’s being made in the lab that might be going into the clinic to help patients, and we provide a way for patients to connect to scientists, which is very very important. And then we also highlight clinical trials. Typically pancreatic cancer patients do not use clinical trials I think the numbers about 4%, which is crazy because our current treatments are not affected in the long run and so we wanna be able to highlight clinical trials in a way that’s really helpful to patients. So they could take the information to their doctor and they have other options for themselves.

N:  Now, I think it’s pretty safe to assume that you’re not the only who’s gonna run into difficulties like that, of course until they come across the Let’s Win initiative. Let’s just be clear. You’ve already got this devastating diagnosis, you’re scrambling for information. The Let’s Win initiative not only offers information, but safe information. We’re not talking about leading someone, some whether going to be doing something illegal and some jungles somewhere, right?

A:   Yes absolutely right, that’s a very important point. Let’s Win has a science advisory board made up with the most prominent and prestigious scientists involved in pancreatic cancer research in the country. Let’s Win is also an initiative supported by the Lustgarten Foundation, which is the largest private funder of pancreatic cancer research in the country. We work very closely with the Lustgarten Foundation and their scientists reviewing every single article that we have on Let’s Win ensuring its scientific accuracy and fact. So people coming to this site need to know that everything that’s posted there is bedded by the Lustgarten Foundation.

N:   I know it may seem on the surface like a very obvious question based on our conversation. But as we wrap up, what is the one overall goal of a Let’s Win initiative and the benefits of actually bringing patients and caregivers, clinicians and scientists altogether in one place?

A:   We wanna extend people’s lives. You reported the horrible statistics about how many pancreatic cancer patients die within a year. We want to change that fact.

N:   And where can our listeners get more information about Let’s Win?

A:   www.letswinpc.org

N:   Thank you for coming in Anne.

A:   Thank you so much for having me.

N:   You’ve been listening to Health Professional Radio, I’m your host Neal Howard, in studio with Anne Glauber, she is the founder of the Let’s Win crowdsourcing platform that was launched earlier this year. It’s a platform that brings together patients, caregivers, clinicians, and scientists all in one place in order to save lives. More than 50,000 people who are diagnosed each and every year in the United States alone with pancreatic cancer, one of the lethal forms of cancer. Our guest is a cancer survivor, and also the founder of that initiative. Transcripts and audio of this program are available at healthprofessionalradio.com.au and also at hpr.fm, and you can subscribe to this podcast on ITunes!

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