Jeana Frost - Bringing new information into Healthcare


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Jeana Frost - Bringing new information into Healthcare

  1. Bringing new information into Healthcare: Going mobile with PatientsLikeMe Jeana H Frost, PhD
  2. Healthcare is traditionally delivered intermittently through formal channels
  3. People with life altering conditions manage health everyday
  4. Camera Accelerometer Note pad Audio recorder Location sensor
  5. Opportunity
  6. Patients sharing health data Value for patients Value for researchers and industry Opportunities for Mobile Computing
  7. Visualizing Health: “It made me more aware of what I need to be doing and the positive things I could do. I have an eating problem you know, and in order to be halfway successful I need to be aware, to think about it before I do it.” -Study participant J. Frost & B. Smith, 2002
  8. Core Platform SHARE FIND LEARN Patients sharing detailed Patients find other patients like The information shared creates health data is what makes them. They discover what a new knowledge about the our communities unique. options are available for real-world treatments, This information is the basis treatment and if their experience symptoms, and reality of living of the PatientsLikeMe with their disease is normal. They with illness. Patients learn about network and validates each can reach out to others like them their disease and themselves in individual. for advice and insight. context of the community.
  9. How it works
  10. Currently over 50,000 Patients, 9 conditions First # Patient PatientsLikeMe Community Patient Members 12% US ALS Nov 2005 4,200 Prevalence MS Mar 2007 13,720 10% US Parkinson’s Mar 2007 3,969 Newly diagnosed HIV/AIDS Sep 2007 2,562 Mood Feb 2008 12,933 PSP Sep 2008 <500 MSA Sep 2008 <500 Devic’s Sep 2008 <500 Fibromyalgia Nov 2008 9,668
  11. How are you feeling? Very good Good Ok Bad Very bad
  12. Section of Mood Profile
  13. Mood Chart for one Member:
  14. Mood Chart for Another Member:
  15. Member of Fibromyalgia Community
  16. Value to this individual “I added the symptom Menstrual Cycle and PMS…Then, I could actually print out my charts and show the doctor: My back pain is more severe, that’s about the only time I have depression or anxiety, even my allergies were worse …”
  17. Researching a Treatment “I wanted a milder analgesic that did not have the strong side effects as the more powerful narcotics …” See who is taking it Read about the effect Discuss findings with the community Why they take it
  18. Value of PatientsLikeMe: Some Results from a User Survey 1,323 Users completed the survey • 71% helpful in learning about the symptoms • 67% getting better care by recording symptoms • 69% feel more comfortable discussing sensitive topics on PatientsLikeMe such as sex, sexuality, religion, or spirituality than in online and offline support groups
  19. What does this mean for our clients?
  20. Data missing from published trials reported on PatientsLikeMe Drug Name Sexual side effect % reported on % reported in (Patient labels) PatientsLikeMe clinical trial * Prozac Sexual side effects 24% 4% Sexual dysfunction 17% (N=169) (N=2869) Lexapro Decreased sex drive 22% 3% (N=106) (N=715) Zoloft Loss of sex drive 27% 6% (N=99) (N=2799) Cymbalta Decreased sex drive 19% 3% (N=122) (N=1139) * as ‘libido decreased’
  21. Better understanding of rare diseases • Primary Lateral Sclerosis (PLS) and Progressive Muscular Atrophy (PMA) are two rare variants of the disease ALS • To date, we now have 182 patients with PLS and 270 with PMA. • Previous studies examined about 40 PLS patients • Can begin to understand PLS progression for the first time
  22. Unique data on the impact of experimental and off-label treatments
  23. “To listen well is as powerful a means of communication and influence as to talk well.” John Marshall
  24. Thank You PatientsLikeMe Team