Social Media Brings People Together Against Pancreatic Cancer [Interview][Transcript]

anne_glauber_pancreatic_cancerGuest: 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 talks about how “Let’s Win” works with other major players in the pancreatic cancer sphere, and how social media is changing how we think about and address pancreatic cancer.

Transcription

Health Professional Radio – Pancreatic Cancer

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 in studio is Anne Glauber. She’s a cancer survivor, specifically a survivor of pancreatic cancer. With more than 53,000 people being diagnosed with pancreatic cancer each year, it’s one of the most lethal forms of cancer. She’s with us today to talk about the Let’s Win crowdsourcing platform that’s allowing researchers, patients and doctors all to come together in order to get information, ground-breaking and new information regarding pancreatic cancer. Welcome to Health Professional Radio today, Anne.

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

N:   Thank you for returning. When you were here before we talked about a little bit of your background, your diagnosis of pancreatic cancer and also about the Let’s Win crowdsourcing platform. For our listeners who may not be familiar with your story, tell us how you were diagnosed with pancreatic cancer.

A: Well, two and a half years ago I was a busy professional. I’m with the full-time job and just published the book and enjoying my life and I happened to had made an appointment to see a dermatologist. During that appointment, the dermatologist put a mirror up to my face and we both gasped and when we saw that the whites of my eyes had turned yellow. And he looked at me and said “I think you have to see your doctor.” I left the appointment immediately and I got a blood test, a sonogram, and a cap skin and then the horrible diagnosis that I have stage 4 pancreatic cancer. I had no symptoms and no signs of the disease and that’s typical for most people because the symptoms of pancreatic cancer can be very vague or nothing at all.

N:   Now Anne, you’re a PR Professional and (crosstalk) you’re work has earned you a bit of national recognition for some innovative communications models, specifically mobilizing the private sector to address public problems. Now, pancreatic cancer is an obvious public problem. You’ve spearheaded Let’s Win, it’s a crowdsourcing platform. It launched earlier this year. Talk about how Let’s Win enables researchers, and patients, and doctors to get information that may not be readily available when someone’s trying to scramble to save their lives.

A:   Yes, when I was diagnosed, my family and I and friends all went on the internet to begin to figure out what to do next and it was extremely difficult to find information. We saw the terrible statistics about the disease, that it was difficult to find information about who are the pancreatic cancer specialists, what were the treatments that were being used, what were effective treatments, and what institutions really, really with specializing in this disease. So, because I had such a difficult time finding information that was one of the reasons that I co-founded Let’s Win because we wanted to put information all in one place that with health patients find the pancreatic cancer specialist, understand what many different kinds of treatments could be available for them, and what their options are. So, Let’s Win was created really to educate and empower patients and families to try to take control of this diagnosis and not feel so discouraged when they heard this. The Let’s Win site has stories that pancreatic cancer patients write about and talk about in terms of their treatment, and what’s working, what’s been effective. It has a promising science section where we report on new innovative science that’s happening in the labs and institutions that can perhaps help patients right now. And we have a really great clinical trial section that highlights clinical trials in a language that people can understand, so patients can take this information to their doctors and discuss it with them and say “could this be the right clinical trial for me? Can you help me pursue information about this clinical trial?”. So, we want to provide this kind of information all in one place that will empower patients and families.

N:   How difficult was it for you to coordinate all of these different resources and specialist and people with different levels of knowledge about the disease. How difficult was it for you to get everyone to cooperate and go in one direction to launch Let’s Win?

A:   That’s I worked with a wonderful, wonderful team of co-founders. Dr. Allyson Ocean, from New York-Presbyterian Weill Cornell, who was  my doctor, was a co-founder of Let’s Win and headed this science advisory board. She was able to invite the top, most prominent and prestigious scientists across the country working on pancreatic cancer to be part of our science advisory board and to submit information about their research to our promising science section. Our other co-founder is Willa Shalit, who has been involved in social change for most of her professional life. She’s an outstanding communicator as well and she was responsible for developing the website for Let’s Win, creating the platform and working with us to put it together. Our other key partner is the Lustgarten Foundation, which is the country’s largest private funder of pancreatic cancer research in the country. Let’s Win is an initiative supported by the Lustgarten Foundation and we work closely with them every single day so that the articles that are on the Let’s Win site have the most important and recent scientific information on our website. We’ve also been able to hire and work with an excellent executive director Let’s Win, Cindy Gavin, who’s enabled us to put all the pieces together. I’m really fortunate that I have this wonderful, outstanding team that works hard everyday to make sure that Let’s Win is relevant, up-to-date, and could help patients as testified.

N:   How often if that all does the Let’s Win crowd sourcing initiative reach out to our learning institutions as in regards to pancreatic cancer? What about some of our learning institutions that are engaged in cancer research?

A:   Our members of our science advisory board are representatives of many research institutions from across the country and major hospitals from across the country. John Hopkins, to Memorial Sloan Kettering, to MD Anderson and we are represented very well across the spectrum of educational institutions, academic institutions, and major hospital. So our science advisory board really reflects the diversity in pancreatic cancer treatment and taps in the best scientific minds were working on this disease.

N:   Let’s talk a bit about some of the cause, they’re going to be discovered once you engage on this research about pancreatic cancer. Being a patient, or maybe a doctor who’s maybe has their first patient that’s been diagnosed with pancreatic cancer and they’re trying to learn just as much as the patient just as quickly. Talk about that.

A:   Yes, you raised a really important point because I have not talked about this. We talked about the importance of Let’s Win to patients and their families, that’s when out of place, I’m in an enormous role for doctors as well. There are many oncologists across the country, thousands of them, who see pancreatic cancer patients but do not special it. And maybe their community oncologist and they have a whole range of patients that they see and so they can benefit enormously from the information that we have on Let’s Win because what we do is we provide information on clinical trials, we provide information on variety of treatments. If doctors see this and go on Let’s Win, they could be informed and educated as well and have the opportunity to discuss the treatment information, with the doctors and specialists highlighted on this site. So, it’s really a way to educate doctors as well and keep them up to date and inform about the latest treatment so that their patients can benefit fully.

N:   Well, I sure thank you for coming and joining us again today, Anne.

A:   Thank you so much for having me again and for enabling me to talk about the importance of Let’s Win.

N:   And where can our listeners go and join Let’s Win?

A:   www.letswinpc.org

N:   Thank you so much. You’ve been listening to Health Professional Radio, I’m your host Neal Howard in studio with Anne Glauber, pancreatic cancer survivor, PR Specialist and Author. She’s been in studio with us talking about the Let’s Win crowdsourcing platform that brings patients, doctors, researchers and anyone who’s looking for information about pancreatic cancer altogether in one place. Transcripts and audio of this program are available at healthprofessionalradio.com.au and also hpr.fm, and you can subscribe to this podcast on iTunes.

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