patientslikeme
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Paul Wicks, R&D Director at PatientsLikeMe, gave an overview of the work he has been involved in at PatientsLikeMe.TRANSCRIPT
Spotlight on PatientsLikeMe
Paul Wicks, PhD – R&D Director
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: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 conversation
Step 5:Play an integral part in your own health care
Our core values
Honor Patients’ Trust
Our patients trust us with their most valued health information. We honor that trust and are dedicated to advancing the knowledge in each 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
22% - I need less inpatient care as a result of using PatientsLikeMe
22% - I need less inpatient care as a result of using PatientsLikeMe
26% - I think about harming myself less as a result of 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
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
63% - I know about the risks & benefits of a drug holiday because of 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?
23% - I have had fewer visits to the ER
23% - I have had fewer visits to the ER
28% - PatientsLikeMe gave me more and better control over my condition
28% - PatientsLikeMe gave me more and better control over my condition
59% -the site has given me a better understanding of my seizures
59% -the site has given me a better understanding of my seizures
49% - recording my seizures helps me manage my condition
49% - recording my seizures helps me manage my condition
50% - PatientsLikeMe helped me understand side effects
50% - PatientsLikeMe helped me understand side effects
2010 Epilepsy User Survey: Those who connect with others on PatientsLikeMe report a wider range of perceived benefits to their epilepsy management and quality of life
30% - PatientsLikeMe helped me be more adherent
30% - PatientsLikeMe helped me be more adherent
One-third of respondents had no one in “the real world” with whom to discuss their epilepsy. After joining PatientsLikeMe, two-thirds reported a connection to at least one other person with epilepsy.
One-third of respondents had no one in “the real world” with whom to discuss their epilepsy. After joining PatientsLikeMe, two-thirds reported a connection to at least one other person with epilepsy.
2010 Epilepsy User Survey: Those who connect with others on PatientsLikeMe report a wider range of perceived benefits to their epilepsy management and quality of life
2011 Epilepsy User Survey: Those who connect with others on PatientsLikeMe report a wider range of perceived benefits to their epilepsy management and quality of life
Spotlight on PatientsLikeMe
Paul Wicks, PhD – R&D Director