PatientsLikeMe

Patients Like Me social media for healthcare

Patients Like Me: Sally Okun

March 31, 2015 Janet Kennedy Get Social Health, Podcast 00:41:06 1 Comment

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:

Blog 

Facebook

Twitter

Website

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social media for healthcare

Patient Community Building in Hospitals

November 11, 2014 Janet Kennedy Get Social Health, Podcast 00:40:48 1 Comment

Dan HinmonIn the “olden days” – like 10 years ago, patients had to have their own support community when dealing with illness or injury. Families and friends, if available, were their only resource  for support. As a healthy person, these caregivers couldn’t truly understand many of the issues, concerns or fears that a patient was feeling. With the advent of easily accessible digital technology and online access, resources are now available to create and support a patient community. Dan Hinmon, President of Hive Strategies specializes in helping hospitals and healthcare organizations set up their own patient communities. Dan works with CareHubs and Dan Dunlop of  Jennings Health to  aid hospitals discover their patient supports needs, set up, install and launch a private, HIPAA compliant healthcare community.

To catch the segments of our conversation, check the time stamp content below.

00:00 Introduction
01:00 Meet Dan Hinmon
01:30 HIPAA compliant healthcare community
02:00 What does a healthcare community mean?
02:42 Does “HIPAA compliance” mean the community is closed?
04:10 Always a risk in sharing
05:00 Why hospitals set up patient communities
06:10 Different kinds of patient community organizations
06:44 How are you invited into patient communities?
07:30 How is a community set up?
08:45 How to you gauge “success”?
10:15 ROI – ROE – Who funds these communities?
10:44 “Return on Community”
13:07 How does the community work once you’re a member?
14:40 Who manages the community?
17:00 Does marketing moderate the conversations?
17:50 The need for a skilled community manager
20:27 How do you manage a community that can be 24/7/365?
22:40 What are the most “engaged” health communities?
24:30 It’s a passion for Dan
25:00 The four steps to a successful online community
29:28 Time commitment needed for “Return on Community”
31:40 ePatients having a place to go.
32:20 Patient engagement is strongest in a patient community
33:10 What is the biggest misconception of Hospitals? Of patients?
34:30 What about “trolls” or difficult community members
36:40 How big does a hospital need to be to be able to support a patient community?
39:06 Social Media Tip: Susana Shephard of Mayo Clinic’s Arizona campus – How to get a video subject to relax

Visit our resources page for more valuable (and free!) resources on social media and digital health:

Dan Hinmon

Hive Strategies

CareHubs

Free webinar, Nov 12, 2014: Look Before You Leap: 5 Things You Must Know Before Launching an Online Patient Community. Register Now. If you don’t have time to listen tomorrow, sign up anyway and they’ll send you a link to watch later.

Patients Like Me

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