Last Friday we kicked off our new weekly podcast series called “It’s Friday – Let’s Journal Club.” Thanks to everyone who tuned in.This week’s guest interview is with Dr. Kevin Dykstra, PhD, who is President and CEO of qPharmetra, a pharmacometric consulting company.Dr. Dykstra stopped by PatientsLikeMe headquarters to talk to our team about the use of modeling and simulation to aid drug development.
After this insightful “Journal Club” session, PatientsLikeMe’s Aaron Fleishman sat down with Dr. Dykstra to learn more about how his team is working to measure the clinical utility of treatments in a systematic, quantitative way.Listen in to hear what exactly that involves and why Dr. Dykstra feels PatientsLikeMe is a “treasure trove of information” that is “incredibly useful” for both patients and drug developers
Every Friday, PatientsLikeMe holds “Journal Club” in our Boston headquarters with a different guest speaker.Last week we were privileged to hear from Dave Hale, Project Manager for Pillbox, a National Library of Medicine (NLM) and Federal Drug Administration (FDA) patient safety initiative.And thanks to PatientsLikeMeOnCall’s new podcast series “It’s Friday – Let’s Journal Club,” you’ll get to hear from him too.
After Journal Club last week, PatientsLikeMe’s Aaron Fleishman sat down with Hale to learn more about Pillbox’s goal of creating a one-stop resource for identifying unknown pills as well as how the project aligns with the Open Government Initiative enacted by President Obama.Tune in below to hear how Hale and his team took drug labeling data from “open to actionable” by listening closely to affected communities.
With every new member at PatientsLikeMe, there is more data generated for research, more dialogue about individual experiences, and a more expansive support network. Additionally, with more patients we can become the world’s largest and loudest representative of the patient voice. To that end, our job in marketing is to share your stories and tell the world about our community to bring in more patients.
Here are highlights of some of the work we did this year to promote your voice and attract the 32,000+ new members we welcomed to the community in 2010. (Enjoy the video recap below as well.)
With a full year under its belt, 2010 was a big year for the PatientsLikeMeInMotionTM program. With slick new t-shirts and a new sign-up form, the program just about doubled in size from 38 teams in 2009 to 60 teams in 2010. More than 1,000 people were rocking PatientsLikeMe t-shirts for their disease awareness walks this year and the company donated $14,800+ in our members’ names to almost 50 nonprofit organizations. (More about our nonprofit partnerships and work we’ve done with them is coming from Molly Cotter next week). Finally, we launched our PatientsLikeMeinMotionTM Flickr page, which features hundreds of photos of all of you walking for team PatientsLikeMe.
In January 2010, PatientsLikeMe launched its first ever podcast called PatientsLikeMeOnCallTM (hosted by our newest marketing team member, Aaron Fleishman). Through a series of podcasts this year, PatientsLikeMe provided insight from our thought leaders on topics most important to you, spotlighted work with partners and gave patients a place for their real voices to be heard. With more than 1,000 subscribers to date, PatientsLikeMeOnCallTM is ready to bring more content to all of our listeners in 2011. Thanks for stopping by and listening!
Along with PatientsLikeMeOnCallTM, PatientsLikeMe continued to spotlight what you’re saying, learning and sharing through our blog (yes, we do manage the content for this lovely page!), Twitter, Facebook, YouTube and more. Our Twitter followers continue to grow with more than 2,100 followers. Our Facebook page now has more than 1,000 fans and our YouTube videos have a combined number of 74,258 views total, with 35,469 views this year alone.
Events, Direct Mail and Newsletters
In addition to attending some events (e.g., 2010 Transplant Games, Parkinson’s Unity Walk) to talk directly to patients, PatientsLikeMe also reached out to medical centers (e.g., epilepsy and transplants) to inform physicians about how patients are benefiting from being members of PatientsLikeMe (see above).
Finally, we’re thrilled to hear how much you enjoyed the monthly community newsletters in 2010. Altogether, we published 90 newsletters this year and featured many of your fellow community members in patient interviews (which also appeared here on the blog). Based on your feedback, we also finally launched an archive section on our site so you can catch up on all the latest and greatest from PatientsLikeMe.
Spreading the word is what we do in marketing, and we can say it is has truly been a pleasure telling the world about all that you do and all that you share through PatientsLikeMe. 2011 will only be better. Thank you and Happy New Year!
“I’ve met a lot of people from all over the world,
we are all one happy family.” – Vigwig
Around and around we go, strap on in for Episode 3 of our podcast series, “The Patient Voice.” To continue with the PatientsLikeMe Parkinson’s Disease (PD) quilt story, our guest today is community member VigWig. A few years back, VigWig underwent surgery for DBS (Deep Brain Stimulation). As word spread throughout the community, Vigwig’s online friends arranged for the quilt to be there waiting for him when he returned to his room from surgery.
Today’s guest is BrownCat87, an active member of the PD community who contributed to the quilt. In this podcast, BrownCat87 shares about everything from her experiences with depression to how DBS has helped her manage her condition to how this quilt made her feel like she was a part of something special. Listen in!
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.
For 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”…
The PatientsLikeMeInMotion sponsorship program has been a tremendous success so far this year! Sponsorship requests from members participating in nonprofit events are flying in by the second from all over the country. It’s exciting to see our members are as active offline as they are online about raising awareness of their condition. The PatientsLikeMeInMotion program gives members the chance to show their PatientsLikeMe spirit, meet and connect with new people about their condition, and, as we like to say, Tell The World about their experiences. It also allows PatientsLikeMe to give back to our 3-star members for all the sharing that they do.
Since April is Parkinson’s Disease Awareness month, we wanted to highlight one particular PatientsLikeMeinMotion team from our Parkinson’s community. This “Team PatientsLikeMe” has been together for 3 years and will once again join hands (and feet) for the Parkinson’s Unity Walk this Saturday (April 24th in New York City). As we continue to get pumped up for this year’s Unity Walk, check out this great video from past events and hear community members “Tell The World” about their experiences with Parkinson’s Disease and PatientsLikeMe.