Patients Like Me is a health data-sharing platform that is transforming the way patients manage their own conditions. Sally Okun, VP Advocacy, Policy & Patient Safety at Patients Like Me visited Get Social Health to talk about how they want to change the way industry conducts research and improve patient care. The numbers of PatientsLikeMe.com are impressive:
- 300,000 members
- 2,300+ conditions
- 50+ published research studies
- 25 million data points about disease
Numbers aside, Sally shared the Patients Like Me mission to help patients connect in a peer-to-peer network. Through their mutual sharing and support patients can also share their personal health data with researchers and pharma companies to help find health solutions and improve outcomes. Listen to the podcast or catch specific moments by following the time stamps below:
[00:00] Introduction
[00:50] Patients online
[02:15] “Dr. Google: What is “Patients Like Me?
[05:00] Getting from Patients Like Me to medical research
[05:58] Results: Epilepisy seizure metering
[06:50] How do patients share their data with their physicians?
[08:01] Are physicians using this data?
[08:50] Seeking balance of data overwhelm vs. data useability
[11:50] 320,000 patients in database, 40,000 Multiple Sclerosis patients
[13:15] Participation in pharma research
[15:58] Patient benefit for participating in Patients Like Me
[18:15] Impact of “connectedness”
[18:37] Caregivers in Patients Like Me
[21:43] Moderation by clinical specialists?
[26:50] Persona based design for PatientsLikeMe.com community
[25:32] Closed community sharing or social sharing?
[28:05] Hospital private communities compared to Patients Like Me
[30:38] What are the biggest misconceptions about online patient communities?
[33:15] HIPAA
[33:30] Is Patients Like Me growing?
[35:50] Wellness apps
[36:30] Demographics of Patients Like Me
[38:45] Patient sharing is critical
40:05 Social Media Tip: Phyllis Khare “4 Ways to increase your online reach”
Patients Like Me social sites:
