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Patient experience: The first billion words

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Inspire CEO Brian Loew offers insight into how patients and caregivers in the Inspire community gather and share information and support.

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Patient experience: The first billion words

  1. 1. Patient  experience:     The  first  billion  words @brianloew
  2. 2. Patients aren’t patient
  3. 3. Medical treatment “I am looking to make contact with people who have the ALK gene and are taking Crizotinib, (Xalkori) (PF-1066). I'm also looking to hear about the Ariad Drug, AP26113 and LDK/378”
  4. 4. Practical advice from someone who understands Michael, living with ALS
  5. 5. Friendship “9th Annual Ovarian Survivors Weekend in Fort Lauderdale, Florida. A time to have fun with your ovarian "sisters."
  6. 6. Death “I wish I could thank every one of you who inspired my Mom, made her laugh, made her cry and made her keep fighting until the end…Ovarian Cancer really sucks. All of you touched my Mom and helped her find a teal sisterhood.”
  7. 7. Celebration “My husband Gary is getting new lungs right now!! We are so thankful for the gift of life.”
  8. 8. Controversy “Why make it even more difficult for us? I'm sorry, but it makes me feel as if I am being punished for once being a smoker!…Lung cancer is lung cancer…Let’s just find a cure for lung cancer for all of us together!”
  9. 9. Marriage “Penny and I found love on a cancer web site and that love is what is keeping us both committed to battling lung cancer and living strong."
  10. 10. Anxiety “Very worried for my dad’s MRI tomorrow…the tumor started to progress minimally and chemo was changed 2 months ago…I just want my dad back.”
  11. 11. Disappointment and sadness “My husband and I have been trying to get pregnant for 8 years. We have had 7 miscarriages and one still birth. We lost twins in June of this year.”
  12. 12. Birth “As I sit here about to write this, I am just in awe that I have made it this far. After a year of IVF treatments, our 5th IUI resulted in the delivery of two precious Little Ones…the best sight EVER!”
  13. 13. Farewell “I made friendships stronger with some of you than I have flesh and blood acquaintances..I love you all and want to thank you for all our years together. Follow your heart and keep looking up.”
  14. 14. Inspiration “October will be 10 years since I heard those words you have cancer…I have a daughter getting married in 2 weeks something I didn't think I would see 10 years ago. Life is good...hope this helps those going forward.”
  15. 15. Hope Michael, living with ALS

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