1. Dont Fail to Communicate:Identify Patient Perceptions ofCommunication Gaps withPhysiciansBrian Loew, InspireSept. 10, 2014

2. A social network, organized byhealth condition, that connectspharmaceutical companies withpatients and caregivers in a safe,permission-based manner.2Inspire OverviewClick to link to a live feed ofactivity across Inspires OncologyCommunities 520,000* members(+12K/month) 207 health communities 2,500,000 visits/month 105 patient advocacy partners 700,000 unique visitors/month 6,376,000 posts (+4K/day)*As of September 2014 3. For patients and caregivers(members), Inspire offers a highquality, health-focused, socialnetwork, organized by diseasearea For patient advocacy partners,Inspire offers a free, branded,online community platform For pharmaceutical companies,Inspire offers access to engagewith members for clinical trial,market research, and/ormarketing initiatives3Coming here has greatly helped me get theanswers to many questions Ive had. 4. Exclusive relationships with105 national patient advocacyorganizations. National patient advocacyorganizations provideauthority and trust and playan important role in organicsearch and growth ofmembers. Inspire owns thecommunities, as well asmember data in thecommunities, and hasexclusive access to members.Click here for a complete list of Inspire partners4Inspire Patient Advocacy Programs 5. 5Goals- Examine how patients in online communitiesdiscuss the topic of side effects and other drugrisks- Identify what patients really value and cravein their patient-doctor interactions- Define the role of industry-sponsored patienteducation 6. Psoriasis patients: actively researching treatments6Patients from our online community frequently research themedications they are given, most often looking for otherpatients experiences with themI look at the official drug's website for any sideeffects. I also learn as much as possible about thedrug. I also Google and see what I can find onsomewhat reputable sites. I always talk to my doctorabout what I find.- Female, 18-30 years old 7. 7More insights from psoriasis patientsUsually the various psoriasis boards where I can getfeedback from actual patients. Always seems like a bettersource of information than from journals or physicianssince it is so much different being the person living dailywith psoriasis than just studying it.Male 31-40 years oldAlways after getting the script to doublecheck side effects and interactionsEpocrates, it's up to date and an app onmy phone, easy, accurate.Female 51-60 years old 8. 8A goal: Shared decision makingMost patients surveyed want to beactively involved in the decision-makingprocess around their care, andit is important for oncologists toexplore this with them. 9. 9Inspire cancer survey:The meaning of personalized healthcare awhitepaper, sponsored by AstraZeneca, inpartnership with pharmaphorum media 10. 10Time, and caring:Good communication underpins positiveoutcomes in oncology and beyond10 11. 11Several potential triggers for stopping treatment(From Inspire survey of advanced breast cancer patients)My oncologist and I have a great relationship, andwhen he tells me we're done, I will accept it. Untilthen, I will be fighting like a mother even when I feellike giving up.When my oncologist says my current treatmentisnt working and there are no more options.When pain from disease or side effects is too severe.Especially if I have already been lucky enough to havebeen alive with MBC for a long time.I always thought that I would do every chemopossible to stay alive, but after a rough summer inchemo and more progression, I am changing mymind. 12. 12And when the disease isnt visible:From Inspires survey of invisible illnesses patients,we found that 85% of those who took the survey(n=231) felt that they at least "sometimes"had difficulty in getting medical professionals tobelieve their self-reported symptom/pain levels.These patients need some validation of their self-assessmentsand want to be seen as having a keystake in the management of these variousconditions we assessed (such as lupus, fibromyalgia,migraine). 13. 13What can pharma supply patients?From our invisible illnesses survey, apx. 75% ofpatients indicated that some type of symptom tracker(either electronic or printed) would be helpful.The same amount of patients also felt that having"Tips/tactics around better ways to communicate withyour physician(s)" would be beneficial. 14. Industry-sponsored patient educationExample: Inspire partnered with a pharma companyand multiple patient advocacy organizations toproduce a Webinar featuring leadingneuroendocrine tumor oncologist Eric Liu, MD.14 15. 15Patients search online often because they have to do so15 16. 16A drive by rare disease patients for answers16 17. 17Ease of discovery of others like you affects traditional physician/patientrelationship17 18. 18Online privacy and patients 19. 19Takeaways- Educational materials that facilitate betterpatient/physician communication can helpimprove patient/physician relations.- More patients affected by diseases areusing social networks to gather healthinformation.- More patients want physicians to treatpatients like partners. 20. 20Takeaways, continuedMany patients want to contribute toresearch, but patients need betterpathways to access researchers.Technology that aids patients andphysicians research diseases matters agreat deal. 21. 21Thank youBrian LoewCEOInspireTwitter: @brianloewbrian@inspire.com