Posted by Lori Piscatelli Scanlon | January 7, 2011
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.)
Social Outreach
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!
As part of our demonstration, we focused a lot on the value of creating a patient profile. Everything you’d want to know about your transplantation journey is charted on the profile to make it easier to visually see what’s going on with you before, during and after your transplant. Many of our patients print out their profile charts and share them with their doctors. Beyond the individual learning, the power of the patient profile is that it is shared with the entire community. The treatment and symptom information you enter gets rolled up into community reports so you can see if what you’re experiencing is similar to the experiences of others, and you can help others do the same.
At the end of the session, we had a lot of great questions. Here are a few:
Can you chart how exercise is helping you minimize symptoms after your transplant? Yes – check out the “exercise treatments” that patients are currently adding to their profile.
Can you only contact other patients publicly through the forum? No. The forum is a great gathering place for many of our patients, but you can also develop relationships one-on-one by sending private messages or leaving comments on other profiles.
Do you have leaflets I can distribute at my dialysis center? Absolutely. If you’re interested in spreading the word in your support groups, you can download some materials on our Tell The World page. If you’d like to receive some more official leaflets to distribute at your Dialysis Center, send us an email with your request at goodies@patientslikeme.com.
We are excited to attend this year’s U.S. Transplant Games. This will be our first time at the Games, so we are grateful to have our Team Mid New England pros guiding the way. If you’re coming to the Games, please stop by our booth at the Expo to say hello and pick up some goodies. And, if you see our logo on the back of a Team Mid New Englander, be sure to ask them for a limited edition PatientsLikeMe Pin. See you at the Games!
Posted by Lori Piscatelli Scanlon | September 24, 2008
You’ve spotted us again! This weekend, PatientsLikeMe was a proud sponsor of the AIDS Walk/Run at Grant Park in Chicago on September 20, 2008. The event, benefiting the AIDS Foundation of Chicago and 70 other local organizations, brought together more than 7,000 people on this warm, sunny day to show their support in the fight against HIV/AIDS. Together, participants raised a projected $400,000 for AIDS-related services.
David Williams, Catherine Brownstein and I were at this event, and we were thrilled to meet so many great people, including one of our current members. As we saw at the AIDS Walk in Boston, there were an overwhelming number of support groups and organizational leaders there dedicated to helping patients.
The PatientsLikeMe HIV community, in particular, was met with great enthusiasm. Our booth visitors loved that we had social networking components on the site, but were more excited about the patient profiles and treatment reports. We displayed sample profiles to show how members can chart their treatments, symptoms and outcomes (like CD4 counts and viral loads), and use that information to find others exactly like them. Many people had heard of websites that offer a place to chat with others, but this health data-sharing approach was new and interesting to all. Let’s just say heard a lot of “wows,” which is always exciting and validating for us.
If you’ve been following our blog, you’ll notice that we’ve been out and about quite a bit this Fall spreading the word about PatientsLikeMe. We’ve exhibited and presented at many events, including the Young-Onset Parkinson’s Network Conference, DBSA Annual Conference, MS Challenge Walk and now the AIDS Walk Chicago. We hope those we’ve met will find their way to our site, and share their stories, their health data, and their passion for advancing the knowledge of these conditions.
At PatientsLikeMe, people with every type of condition are coming together to share their health experiences, find patients like them and learn how to take control of their health. The result is improved care for patients as well as an acceleration of real-world medical research.
Stay tuned to our blog for the latest happenings with our company, our patients and our mission of opening up the healthcare system.