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Paul Wicks, R&D Director at PatientsLikeMe, gave an overview of the work he has been involved in at PatientsLikeMe.

Paul Wicks, R&D Director at PatientsLikeMe, gave an overview of the work he has been involved in at PatientsLikeMe.

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    PatientsLikeMe PatientsLikeMe Presentation Transcript

    • Paul Wicks, PhD – R&D DirectorSpotlight on PatientsLikeMe
    • The PatientsLikeMe process is to help people share their health information in order to learn fromothers 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 valuesHonor 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 shouldnt 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 havethe risks & benefits reduced behaviors Iof a drug holiday knew were riskybecause of because ofPatientsLikeMe PatientsLikeMe22% - I need less 26% - I think aboutinpatient care as a harming myself lessresult of using as a result ofPatientsLikeMe 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” withto discuss their epilepsy.wider range of perceived benefits to their PatientsLikeMe report a After joining PatientsLikeMe, two-thirds epilepsy management and quality of lifereported a connection to at least one other person with epilepsy.59% -the site has 50% - 30% -given me a better PatientsLikeMe PatientsLikeMeunderstanding of helped me helped me be moremy seizures understand side adherent effects23% - I have hadfewer visits to theER28% -PatientsLikeMe gaveme more andbetter controlover my condition49% - recordingmy seizures helpsme manage mycondition
    • 2010 Epilepsy User Survey: with otherswho connectreport a wider rangeon 2011 Epilepsy User Survey: Those who connect Those on PatientsLikeMe with others ofPatientsLikeMetheir epilepsy management and qualityperceived benefits to their perceived benefits to report a wider range of of lifeepilepsy management and quality of life
    • Paul Wicks, PhD – R&D DirectorSpotlight on PatientsLikeMe