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Paul Wicks, PhD – R&D Director
Spotlight on PatientsLikeMe
The PatientsLikeMe process is to help people share their health information in order to learn from
others like them and then use that information to discuss treatment options with their health care
                                              team



        Step 1:                                                             Step 2:
        Create/update and                                                   Find support from
        share your health                                                   others like you and
        profile                                                             compare experiences




  Step 5:                                                                         Step 3:
  Play an integral                                                                Learn from aggregated
  part in your own                                                                community Treatment
  health care                                                                     and Symptom Reports




                                Step 4:
                                Take profile to your doctor to have an
                                improved treatment conversation
Our core values

Honor Patients’ Trust                    Openness
 Our patients trust us with their most   Per our Openness Philosophy, we
 valued health information. We honor     believe that sharing health information
 that trust and are dedicated to         is good. Why? Because sharing will
 advancing the knowledge in each         drive massive change in healthcare.
 disease with the information they
 share.


                          PATIENTS FIRST
 No surprises. Our members shouldn't     When people see our site, we want
 be surprised by anything we do. Our     them to think, “Wow!” Achieving our
 goal is to disclose what we do with     vision takes flawless execution and a
 members' information, how we make       deep understanding of patient needs.
 money, as well as all of our
 partnerships on the site.

Transparency                             Create WOW!
63% - I know about     41% - I have
the risks & benefits   reduced behaviors I
of a drug holiday      knew were risky
because of             because of
PatientsLikeMe         PatientsLikeMe

22% - I need less      26% - I think about
inpatient care as a    harming myself less
result of using        as a result of
PatientsLikeMe         PatientsLikeMe
   MS patients using needle-
    based treatments struggle
    to be adherent despite side
    effects and other barriers
   Literature review, forum
    discussion review, and
    surveys combined to
    develop a new instrument
    (MS Treatment Adherence
    Questionnaire)
   MSTAQ predictive of
    missed doses and
    suggests coping
    mechanisms for clinical
    use
   Funded by Novartis
   Instrument released open
    access for any use
Case Study: How helpful would these interventions be for improving immunosuppressant adherence?
One-third of respondents had no onewho“the realwith others onwhom
 2010 Epilepsy User Survey: Those in connect world” with
to discuss their epilepsy.wider range of perceived benefits to their
 PatientsLikeMe report a After joining PatientsLikeMe, two-thirds
 epilepsy management and quality of life
reported a connection to at least one other person with epilepsy.

59% -the site has     50% -                   30% -
given me a better     PatientsLikeMe          PatientsLikeMe
understanding of      helped me               helped me be more
my seizures           understand side         adherent
                      effects
23% - I have had
fewer visits to the
ER
28% -
PatientsLikeMe gave
me more and
better control
over my condition

49% - recording
my seizures helps
me manage my
condition
2010 Epilepsy User Survey: with otherswho connectreport a wider rangeon
 2011 Epilepsy User Survey: Those who connect Those on PatientsLikeMe with others of
PatientsLikeMetheir epilepsy management and qualityperceived benefits to their
 perceived benefits to report a wider range of of life
epilepsy management and quality of life
Paul Wicks, PhD – R&D Director
Spotlight on PatientsLikeMe

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PatientsLikeMe

  • 1. Paul Wicks, PhD – R&D Director Spotlight on PatientsLikeMe
  • 2. The PatientsLikeMe process is to help people share their health information in order to learn from others like them and then use that information to discuss treatment options with their health care team Step 1: Step 2: Create/update and Find support from share your health others like you and profile compare experiences Step 5: Step 3: Play an integral Learn from aggregated part in your own community Treatment health care and Symptom Reports Step 4: Take profile to your doctor to have an improved treatment conversation
  • 3.
  • 4.
  • 5. Our core values Honor Patients’ Trust Openness Our patients trust us with their most Per our Openness Philosophy, we valued health information. We honor believe that sharing health information that trust and are dedicated to is good. Why? Because sharing will advancing the knowledge in each drive massive change in healthcare. disease with the information they share. PATIENTS FIRST No surprises. Our members shouldn't When people see our site, we want be surprised by anything we do. Our them to think, “Wow!” Achieving our goal is to disclose what we do with vision takes flawless execution and a members' information, how we make deep understanding of patient needs. money, as well as all of our partnerships on the site. Transparency Create WOW!
  • 6. 63% - I know about 41% - I have the risks & benefits reduced behaviors I of a drug holiday knew were risky because of because of PatientsLikeMe PatientsLikeMe 22% - I need less 26% - I think about inpatient care as a harming myself less result of using as a result of PatientsLikeMe PatientsLikeMe
  • 7. MS patients using needle- based treatments struggle to be adherent despite side effects and other barriers  Literature review, forum discussion review, and surveys combined to develop a new instrument (MS Treatment Adherence Questionnaire)  MSTAQ predictive of missed doses and suggests coping mechanisms for clinical use  Funded by Novartis  Instrument released open access for any use
  • 8. Case Study: How helpful would these interventions be for improving immunosuppressant adherence?
  • 9. One-third of respondents had no onewho“the realwith others onwhom 2010 Epilepsy User Survey: Those in connect world” with to discuss their epilepsy.wider range of perceived benefits to their PatientsLikeMe report a After joining PatientsLikeMe, two-thirds epilepsy management and quality of life reported a connection to at least one other person with epilepsy. 59% -the site has 50% - 30% - given me a better PatientsLikeMe PatientsLikeMe understanding of helped me helped me be more my seizures understand side adherent effects 23% - I have had fewer visits to the ER 28% - PatientsLikeMe gave me more and better control over my condition 49% - recording my seizures helps me manage my condition
  • 10. 2010 Epilepsy User Survey: with otherswho connectreport a wider rangeon 2011 Epilepsy User Survey: Those who connect Those on PatientsLikeMe with others of PatientsLikeMetheir epilepsy management and qualityperceived benefits to their perceived benefits to report a wider range of of life epilepsy management and quality of life
  • 11.
  • 12.
  • 13.
  • 14.
  • 15.
  • 16.
  • 17.
  • 18.
  • 19.
  • 20. Paul Wicks, PhD – R&D Director Spotlight on PatientsLikeMe