5 posts tagged “medicine 2.0”

PatientsLikeMe at Medicine 2.0

Posted September 26th, 2012 by

With more than 500 attendees from 36 countries, the 5th Annual Medicine 2.0 World Congress took place September 15-16th at Harvard Medical School here in Boston.  Among these attendees were several PatientsLikeMe leaders, including keynote speaker Jamie Heywood and conference presenters Sally Okun and Paul Wicks.

The 5th Annual Medicine 2.0 Congress Took Place in Our Home City of Boston

In an unusual twist, all three PatientsLikeMe speakers got to present back-to-back, starting with Co-Founder and Chairman Jamie Heywood’s opening keynote about how his brother Stephen’s experience with ALS shaped his understanding of basic concepts like health, well-being and disease.  He then shared how PatientsLikeMe was founded to help patients like Stephen record and share their symptom and treatment data in a way that is meaningful to them, other patients and researchers. “Human networks are connecting information and data in ways that have never before existed,” he told the crowd.

Next to speak was Dr. Paul Wicks, our Research & Development Director, who gave a presentation entitled “But Will It Scale?  Lessons in Growth from PatientsLikeMe.”  He discussed how PatientsLikeMe evolved from a data-sharing platform for patients with a single disease – ALS – to a general platform serving more than 160,000 patients with more than 1,300 health conditions and a myriad of symptoms.   Important lessons covered included streamlining the research processes, refining the medical ontology and adjusting the business model.

Finally, PatientsLikeMe Health Data Integrity Manager Sally Okun – whose talk was entitled “Patient Voices:  The Power of Shared Knowledge” – then looked at some of the challenges of turning individual stories into shared knowledge.  One of the biggest hurdles:  how do you capture the patient experience in clinical terms, given that patients don’t speak this way?  For example, instead of talking about a “gait disturbance,” patients might report that they are stumbling, limping, dragging a foot or “walking like a drunk.”  (In fact, Sally shared that PatientsLikeMe members have used 35 different terms for this one clinical concept.)

What was the reaction to this trio of talks?  Sally reports, “I think the juxtaposition of Jamie, Paul and me speaking was quite effective.  Our commitment to capturing and honoring the patient voice certainly resonated with the people I spoke with.” Another way to gauge the response – and certainly an apropos one given the conference’s focus on social media – is to examine the Twitter activity generated by these presentations. Here are a few of the 7,000+ (!) Tweets associated with the conference hashtag #med2 that gave shout outs to PatientsLikeMe:

Click Here to See Cassie's Very Cool Sketch!

A Quote From Jamie Heywood's Keynote Address

Sally Okun's Poem Resonated with Susannah Fox and Others

This Quote in Jamie's Talk Got a Lot of Attention

We Like These Big Important Questions About PatientsLikeMe!


Mental Health Awareness: What do you know about Mood Conditions?

Posted October 15th, 2010 by

In honor of this month’s Mental Illness Awareness Week, here’s a snapshot of what’s happening in our PatientsLikeMe Mood community. Launched in 2008, the community now has more than 18,000 patients. Below are some interesting facts about the community, so please read and share on!

DID YOU ALSO KNOW…screen-shot-2010-10-15-at-33639-pm1

  • You can search for patients under 15+ diagnosis categories, including depression, bipolar, obsessive-compulsive disorder (OCD), post-traumatic stress disorder (PTSD), anxiety, addiction to tobacco, addiction to alcohol, eating disorder and more.
  • In a PatientsLikeMe research study recently published in the Journal of Medical Internet Research, we revealed:
    • 26% of responding mood community members agreed or strongly agreed that using the site had reduced thoughts about self harm
    • 23% agreed they had decided to start therapy or counseling after interacting with others on the site
    • 22% agreed they needed less inpatient care as a result of using PatientsLikeMe.  (See our “Patient Voice” report, video and member interview on inpatient therapy).
  • Members’ experiences on the treatment Amitriptyline was used in an award-winning paper presented at Medicine 2.0 last year.

How are our members treating their condition?

What are their major symptoms?

What are they talking about?

  • Some of the top topics “tagged” in our forum discussions to date include specific treatments (like Lamictal, Lithium, Wellbutrin and Seroqul), as well as borderline personality disorder, coping, anger and journaling.