2 posts tagged “On Call”

New Podcast Series: “The Patient Voice” Premieres This Thursday

Posted October 5th, 2010 by

On Thursday October 7, 2010, the PatientsLikeMeOnCall TM podcast is proud to present a new series called “The Patient Voice.”  Through these podcasts, you’ll hear emotional and inspiring stories from our community members that demonstrate the type of sharing and positive connections being made by patients on our site and how these connections are affecting their lives.

pdquiltFor the first run in the series, we’ll be focusing on the PatientsLikeMe Parkinson’s community and hearing from members about a very special handmade quilt.  A few years ago, members of this community came together online and decided to create the quilt as a fun activity to get them through the winter season. Each patch of the quilt is designed by a different member of the community and demonstrates, in a very personal way, something about the individual and her/his experience living with Parkinson’s disease. Initially a fun passion project, the quilt has become an expression of the power of community. Little did the quilters know how much their project would end up impacting their lives, the lives of other members, and, even beyond that, the lives of people in the Parkinson’s disease community as a whole. This quilt has traveled all over the world; it’s been featured in countless news publications spotlighting our members and their work with Parkinson’s disease; it was spotlighted by the Dartmouth Hitchcock Medical Center in their Health Living & Learning conference brochure; and it was, in part, the inspiration for the Parkinson’s Quilt Project being pulled together by the National Parkinson’s Foundation.

In this five part series, we will be talking to some of the members who contributed patches to the quilt as well as other people who have been touched by the quilt. To get you geared up for this series, here is a quick clip from our interview with PD community member, BrownCat.

The premiere launches this Thursday (October 7th) at 2pm EST with an interview with PokieToo, and the other interviews will run every Tuesday following.  To listen to the series, you can subscribe to our iTunes page or you can find our podcasts on our PodBean page. Get ready to be moved by “The Patient Voice”…

PatientsLikeMe member afleishman


Know Thy Self – Measuring Your Quality of Life

Posted June 17th, 2010 by

Last Fall, PatientsLikeMe introduced our Quality of Life (QoL) tool which is displayed on the profiles of members in the HIV community.  By answering a few questions, patients can see how HIV is impacting them – physically, socially and mentally.  Today, this same QoL measure is used by thousands of patients across the HIV community and other communities, such as Epilepsy and Organ Transplants.

PatientsLikeMe Research Scientist, Michael Massagli, recently spoke with us in a PatientsLikeMeOnCallTM podcast interview about the goal, outcomes and benefits to measuring your quality of life. Listen here:

“[In the HIV community], we’ve taken a look at the relationship between QoL and CD4 level and find the average score of patients with CD4 below 200 is significantly lower for physical, mental and social well-being.  People with the most comprised immune systems have worse quality of life, across all 3 domains, than other patients… “

To date, several of our members have at least three QoL scores on their profile.  Mike says, “Multiple uses of the QoL instrument by the same person over time helps researchers determine how small a change in QoL scores is meaningful to patients or important enough to evaluate how a treatment is working.”

Adds R&D Director, Paul Wicks, “We all know that measuring disease is important; tumor size in cancer, blood tests in cardiovascular disease, or frequency of seizures in epilepsy, for instance. Increasingly though, clinicians and researchers are coming to realize that these measures don’t give the whole story; they’re missing the real impact of a condition on patient’s ability to function. You might have high blood pressure but it doesn’t affect your life at all, or you might have a relatively low amount of pain (as measured by, say a 0-10 pain scale), but it could be interfering with your work life a great deal.”

So have you completed a quality of life survey recently?  If so, you’ll also notice a cool new feature on the site that helps you better understand how your quality of life compares to others.  When you take 5 minutes to answer the 24 questions in the survey, here’s what you’ll see:

screen-shot-2010-06-16-at-105445-am

As Mike says in his podcast, this is just the beginning.  Stay tuned for more about quality of life measurements.