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Sally Okun

  1. 1. 7th Annual Weitzman Symposium – June 7, 2012 PatientsLikeMe: Patient Centered Virtual Medical Home
  2. 2. Healthcare Reform Personalized Medicine Clinician Accountability Activated Patients “A great wind is blowing and that gives you either imagination or a headache” Catherine the Great
  3. 3. 3 …major driver is technology!
  4. 4. 4 The Social Life of Health Information, 2011 “I don’t know, but I can try to find out” §  80% of Internet users have looked online for information about a specific condition or treatment. §  34% have read someone else’s commentary or experience about health or medical issues online §  25% have watched an online video about health or medical issues §  Health professionals and offline resources are central to health care, but people use online social tools to: –  gather information –  share stories –  discuss concerns
  5. 5. 5 Social Life of Healthcare Online is Changing “I know, and I want to share my knowledge” §  27% of Internet users have tracked their weight, diet, exercise, symptoms or some other health indicator §  14% of social network users have raised money for or drawn attention to health-related issue or cause §  11% of social network users have posted comments, queries, or information about health or medical matters §  The social life of health information is robust and is being driven forward by: –  Availability of online social tools –  Access to health related mobile technology –  Motivation to connect with others
  6. 6. 6 Organizing the Power of Social Media & Mobile Technology Individual Stories Collective Wisdom
  7. 7. “Given my status, what is the best outcome I can hope to achieve, and how do I get there?”
  8. 8. 8 Engaging Patients Responsibly Honor Patients’ Trust Our patients trust us with their most valued health information. We honor that trust, and we are dedicated to advancing the knowledge in the disease with the information they share. Openness Per our Openness Philosophy, we believe that sharing health information is good. Why? Because sharing will drive massive change in healthcare. Transparency No surprises. Our members shouldn't be surprised by anything we do. Our goal is to disclose what we do with members' information, how we make money, as well as all of our partnerships on the site. Create WOW! When people see our site, we want them to think, “Wow!” Achieving our vision takes flawless execution and a deep understanding of patient needs. PATIENTS FIRST
  9. 9. 10 Patient Engagement: Share, Find, Learn Step  1:   Create/update  and   share  your  health   profile   Step  2:   Find  support  from   others  like  you  and   compare  experiences   Step  3:   Learn  from  aggregated   community  Treatment   and  Symptom  Reports   Step  4:   Take  profile  to  your  doctor  to  have  an   improved  treatment  conversa?on   Step  5:   Play  an  integral   part  in  your  own   health  care  
  10. 10. 11 Share: Technology Amplifies One Patient’s Voice •  Member Voice n = 1 •  Welcomes and comments sent n = 16,000 •  Patients she reached out to n = 15,000 •  Network power n = limitless
  11. 11. 13 Find: Power of Social Network Connections Every line represents a single patient viewing a single profile on a single day Red line = viewer Blue line = viewee
  12. 12. 14 Learn: Transforming Experiences into Data
  13. 13. 15 Understand: Putting Experiences into Context
  14. 14. 16 User Voices: Creating a Patient Vocabulary
  15. 15. 17 Clinical Trial Data Updated Nightly
  16. 16. Partnering with Patients in Research
  17. 17. 19 Survey says.... “we don’t tell you everything”
  18. 18. 22% - I need less inpatient care as a result of using PatientsLikeMe 26% - I think about harming myself less as a result of PatientsLikeMe 41% - I have reduced behaviors I knew were risky because of PatientsLikeMe 63% - I know about the risks & benefits of a drug holiday because of PatientsLikeMe
  19. 19. 21 * Wicks P, Massagli M, Frost J, Brownstein C, Okun S, Vaughan T, Bradley R, Heywood J, (2010) Sharing Health Data for Better Outcomes on PatientsLikeMe, Journal of Medical Internet Research, 12(2):e19 Patient Report Improved Adherence
  20. 20. 22 Patient Reported Benefits: Epilepsy users report One-third of respondents had no one in the real world with whom to discuss their epilepsy. After joining, two-thirds reported a connection to at least one other
  21. 21. 23 §  Patient-reported online data collection is an alternative method for studies of efficacy for off-label drugs which are unlikely to be funded commercially §  ALS patients are using amitriptyline to dry excess saliva; using a side effect as a primary purpose §  Rated more effective for its side effects than its indication! §  Winner of the inaugural Medicine 2.0 prize 21% of all prescriptions are for off-label purposes; 73% of these lack scientific evidence for their use Contributing New Information: Off-label Uses
  22. 22. 24 Patient Requested Trial on PatientsLikeMe
  23. 23. 25 Timeline: ALS Patient Activity Related to Lithium

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