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Michael AMANDA Spitz NELSON RADIAN6 Ignite Health
The ePatient Digital EcosystemWho is talking, how much, andabout what? Seeking health information online 80% of 245M online consumers 3rd most popular after email and search 18% find others with similar health issues Self-disclosing their diagnosis by social media platform Russell Herder: Seeking Social Solace
The Island of PharmaTraditional one-way communication model Relatively slow to embrace digital   7 19   2 % % % of overallpharma marketing budgets think digital budget will increase >20% feel like their company is far ahead Pharma willingness to use social To communicate with patients Across Health digital Survey EMEA 2011
The Undiscovered CountryWho are our patients, and what do they need?  ?
N = 1: Steve JobsDigital revolutionary and business wunderkind 6
Why is He Relevant Here? Pancreatic cancer survivor  7
We Think We Know SteveWhat about the 44K new pancreatic cancer patients in 2011?
The Social Media Monitoring BridgeListening is the first step to connecting Sophisticated tools exist to listen, discover, measure, and engage in conversations across the social web Let’s use Radian6 to demonstrate by exploring the hearts and minds of pancreatic cancer patients
Query Methodology & ArchitecturePancreatic Cancer Conversation Filters
11 Log into Radian6
Steps 1 to 4From Topic Profile to Dynamic Dashboard
13 Step 1: Filter by Setting Up Your Radian6 Topic Profile
14 Step 2: Choose How to View the Filtered Data Stream
15 Step 3: Choose Which Visuals Go Into Your Dashboard
16 Step 4: Study Your Pancreatic Cancer Dashboard
Steps 5 to 8From General Insights to Choosing the Best Sites
Step 5: Extract Insights from Dashboard DataBuzz Volume & Top Phrases
19 Step 6: Analyze Relevant Key Word Searches Last 30 Days
20 Step 7: Determine the Quality of Actual Patient Content
21 Step 8: Enter the Best Platforms to Investigate Further
Step 9 to 10From conversations to profound patient insights
23 Step 9: Narrow Down the Platforms for Your Deep Dive
24 Step 10: Extract Insights from Discussions “The bottom line is that the patient really doesn't have quality time - but maybe less pain and a possible month or two more of life. Right now I believe hubby wants the quality of life and he will deal with the pain and I am not sure this is the right direction and can't find answers.”
25 Example: Patient Responses Around “Quality of Life” “The decision of quality vs. quantity is one that only your husband can make, but he must be fully informed on all options before making a choice. For some, it's not worth it, but for others, it can buy significant extra time. I'll be honest --- it wasn't a picnic for my husband, as he had a ton of chemo treatments, but it assuredly bought him a good two years of time here with us. It was his choice and I was glad he made that one.” "My best friend is on the same combination chemo as diyrich, oxaliplantin and Gemzar. It's worked very well for her and she still has a decent quality of life. Single agent Gemzar only worked on her for a short time before they switched. I'm very hopeful." "He receives 1 treatment of each drug once a week for 3 weeks then 1 week off. He has had every side effect but low blood counts. He has had 8 treatments - the last being Gemzar only because he has been so weak. Dad was very healthy before starting and the chemo really beats him down. He has almost no quality of life while taking treatments. When he gets a break he starts feeling more like himself. "
Poll: Quality of Life vs. Surgery to Extend Life “Imagine you're old, like in your mid-70s old, and you're diagnosed with a very nasty kind of cancer.  You're at the every early stages so right now you feel fine and are enjoying life, but you know eventually this cancer will grow and manifest itself in a very ugly way.  Who knows how long that will take, but it will happen.  Your options are to do nothing OR have a very complicated surgery.  This surgery would cause you all kinds of problems and its own set of miseries - lots of pain, possibly diabetes, you'd have to use a feeding tube for a very long time, nausea and all kinds of gut upset.   On top of that the odds aren't all that great.  Less than 50% of people who have this surgery survive past 5 years due to recurring cancer or metastasis.  Ugh.  So the options are good quality of life now knowing you're living on borrowed time or immediately have that quality of life go significantly down and pretty much never being the same again but with a chance of extending your life.” “…options are good quality of life now knowing you're living on borrowed timeor immediately have that quality of life go significantly down … but with a chance of extending your life.” Source; http://community.thebump.com/cs/ks/forums/thread/51009676.aspx?MsdVisit=1#ctl00_mcr_ctl00___PostRepeater_ctl20_DivPos
Poll: Quality of Life vs. Surgery to Extend Life “I've had this discussion a lot with my mother because of some of the issues that came up with my gradfather. My mom has made it clear that she rather have quality of life than quantity. She has come to terms that when it's her time, it's her time. I feel the same way.” “I voted, "couldn't say," but I am leaning towards not doing itTherewere *still* complications and a long, difficult recover. Getting used to the ostomy and a lower quality of life, even temporarily, was crushing for Jon- and that's w/ knowing there was an end in sight. To go into a surgery knowing that the cancer would/ could come back w/in 5 years anyway would mean that I was living in indefinite fear of dying. ” "Having watched someone I love die from pancreatic cancer, I can honestly say that I would have the surgery if it was an option. Even if the surgery was only going to help me survive long enough so that I could die another way, I would have it.  Even without having surgery, your quality of life is virtually non-existent when you have more advanced pancreatic cancer.
28 Patients’ Perception of Steve Jobs “Also maybe you can break the ice with printed material - it is widely known that PC is a very tough disease - and there are many people including public ones who are & have struggles with it. Steve Jobs comes to mind” “There has been enough in the media with Steve Jobs and Patrick Swayze that most people know how serious pancreatic cancer is. I know how hard it is not to discuss it with your mom. Each patient is different in how they choose to deal with their illness. A little denial can be healthy. I recommend to everyone the book Final Gifts by 2 hospice nurses. You may not agree with everything they say but it helped me understand what my dad is going through. “ 79% 21% Steve jobs mentions
Key Insights: Pancreatic cancer patients are unique, struggling with quality vs survival issues Pharma is listening, and can provide value-added resources that address this issue in emotional, accessible terms patients can relate to and understand
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ePatCon11: Spitz - ePatients are Talking, and Pharma is Listening

  • 1. Michael AMANDA Spitz NELSON RADIAN6 Ignite Health
  • 2.
  • 3. The ePatient Digital EcosystemWho is talking, how much, andabout what? Seeking health information online 80% of 245M online consumers 3rd most popular after email and search 18% find others with similar health issues Self-disclosing their diagnosis by social media platform Russell Herder: Seeking Social Solace
  • 4. The Island of PharmaTraditional one-way communication model Relatively slow to embrace digital 7 19 2 % % % of overallpharma marketing budgets think digital budget will increase >20% feel like their company is far ahead Pharma willingness to use social To communicate with patients Across Health digital Survey EMEA 2011
  • 5. The Undiscovered CountryWho are our patients, and what do they need? ?
  • 6. N = 1: Steve JobsDigital revolutionary and business wunderkind 6
  • 7. Why is He Relevant Here? Pancreatic cancer survivor 7
  • 8. We Think We Know SteveWhat about the 44K new pancreatic cancer patients in 2011?
  • 9. The Social Media Monitoring BridgeListening is the first step to connecting Sophisticated tools exist to listen, discover, measure, and engage in conversations across the social web Let’s use Radian6 to demonstrate by exploring the hearts and minds of pancreatic cancer patients
  • 10. Query Methodology & ArchitecturePancreatic Cancer Conversation Filters
  • 11. 11 Log into Radian6
  • 12. Steps 1 to 4From Topic Profile to Dynamic Dashboard
  • 13. 13 Step 1: Filter by Setting Up Your Radian6 Topic Profile
  • 14. 14 Step 2: Choose How to View the Filtered Data Stream
  • 15. 15 Step 3: Choose Which Visuals Go Into Your Dashboard
  • 16. 16 Step 4: Study Your Pancreatic Cancer Dashboard
  • 17. Steps 5 to 8From General Insights to Choosing the Best Sites
  • 18. Step 5: Extract Insights from Dashboard DataBuzz Volume & Top Phrases
  • 19. 19 Step 6: Analyze Relevant Key Word Searches Last 30 Days
  • 20. 20 Step 7: Determine the Quality of Actual Patient Content
  • 21. 21 Step 8: Enter the Best Platforms to Investigate Further
  • 22. Step 9 to 10From conversations to profound patient insights
  • 23. 23 Step 9: Narrow Down the Platforms for Your Deep Dive
  • 24. 24 Step 10: Extract Insights from Discussions “The bottom line is that the patient really doesn't have quality time - but maybe less pain and a possible month or two more of life. Right now I believe hubby wants the quality of life and he will deal with the pain and I am not sure this is the right direction and can't find answers.”
  • 25. 25 Example: Patient Responses Around “Quality of Life” “The decision of quality vs. quantity is one that only your husband can make, but he must be fully informed on all options before making a choice. For some, it's not worth it, but for others, it can buy significant extra time. I'll be honest --- it wasn't a picnic for my husband, as he had a ton of chemo treatments, but it assuredly bought him a good two years of time here with us. It was his choice and I was glad he made that one.” "My best friend is on the same combination chemo as diyrich, oxaliplantin and Gemzar. It's worked very well for her and she still has a decent quality of life. Single agent Gemzar only worked on her for a short time before they switched. I'm very hopeful." "He receives 1 treatment of each drug once a week for 3 weeks then 1 week off. He has had every side effect but low blood counts. He has had 8 treatments - the last being Gemzar only because he has been so weak. Dad was very healthy before starting and the chemo really beats him down. He has almost no quality of life while taking treatments. When he gets a break he starts feeling more like himself. "
  • 26. Poll: Quality of Life vs. Surgery to Extend Life “Imagine you're old, like in your mid-70s old, and you're diagnosed with a very nasty kind of cancer. You're at the every early stages so right now you feel fine and are enjoying life, but you know eventually this cancer will grow and manifest itself in a very ugly way. Who knows how long that will take, but it will happen. Your options are to do nothing OR have a very complicated surgery. This surgery would cause you all kinds of problems and its own set of miseries - lots of pain, possibly diabetes, you'd have to use a feeding tube for a very long time, nausea and all kinds of gut upset. On top of that the odds aren't all that great. Less than 50% of people who have this surgery survive past 5 years due to recurring cancer or metastasis. Ugh. So the options are good quality of life now knowing you're living on borrowed time or immediately have that quality of life go significantly down and pretty much never being the same again but with a chance of extending your life.” “…options are good quality of life now knowing you're living on borrowed timeor immediately have that quality of life go significantly down … but with a chance of extending your life.” Source; http://community.thebump.com/cs/ks/forums/thread/51009676.aspx?MsdVisit=1#ctl00_mcr_ctl00___PostRepeater_ctl20_DivPos
  • 27. Poll: Quality of Life vs. Surgery to Extend Life “I've had this discussion a lot with my mother because of some of the issues that came up with my gradfather. My mom has made it clear that she rather have quality of life than quantity. She has come to terms that when it's her time, it's her time. I feel the same way.” “I voted, "couldn't say," but I am leaning towards not doing itTherewere *still* complications and a long, difficult recover. Getting used to the ostomy and a lower quality of life, even temporarily, was crushing for Jon- and that's w/ knowing there was an end in sight. To go into a surgery knowing that the cancer would/ could come back w/in 5 years anyway would mean that I was living in indefinite fear of dying. ” "Having watched someone I love die from pancreatic cancer, I can honestly say that I would have the surgery if it was an option. Even if the surgery was only going to help me survive long enough so that I could die another way, I would have it. Even without having surgery, your quality of life is virtually non-existent when you have more advanced pancreatic cancer.
  • 28. 28 Patients’ Perception of Steve Jobs “Also maybe you can break the ice with printed material - it is widely known that PC is a very tough disease - and there are many people including public ones who are & have struggles with it. Steve Jobs comes to mind” “There has been enough in the media with Steve Jobs and Patrick Swayze that most people know how serious pancreatic cancer is. I know how hard it is not to discuss it with your mom. Each patient is different in how they choose to deal with their illness. A little denial can be healthy. I recommend to everyone the book Final Gifts by 2 hospice nurses. You may not agree with everything they say but it helped me understand what my dad is going through. “ 79% 21% Steve jobs mentions
  • 29. Key Insights: Pancreatic cancer patients are unique, struggling with quality vs survival issues Pharma is listening, and can provide value-added resources that address this issue in emotional, accessible terms patients can relate to and understand
  • 30. Q & A

Editor's Notes

  1. We set up the pancreatic cancer dashboard - a space where we can create and view all our widgetsClick on configuration to create the Topic Profile