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