2 posts tagged “Kara Smith”

2014 recap – part II

Posted December 30th, 2014 by

2014 was full of new partnerships, research initiatives and PatientsLikeMe milestones (we just celebrated our 10th anniversary last week!), and in 2015 we’ll continue to put the patient first in everything we do.

At PatientsLikeMe
Everything we do starts with the community that shares their health data and experiences, which enables innovation and change in healthcare, for good. Here’s just some of what everyone helped accomplish in 2014:

  • We formed our first-ever, patient-only Team of Advisors to give feedback on research initiatives and create new standards that will help all researchers understand how to better engage with patients.
  • Three new advisors were named to the Scientific Advisory Board for the Open Research Exchange (ORE), a platform where researchers design, test and share new measures for diseases and health issues. The board was formed in 2013 to lend scientific, academic, industry, and patient expertise to ORE
  • The community celebrated the sixth anniversary of PatientsLikeMeInMotion™.
  • We worked with Tam, a PatientsLikeMe MS member, to develop the first-ever patient led health measure for chronic pain on the Open Research Exchange. She’s going to start testing the measure in January and it will be available in the ORE library in 2015.
  • Data for Good launched in March topromote the value of sharing health information to advance research and underscore the power of donating health data to improve one’s own condition.
  • We followed that up with 24 Days of Giving in November, a month-long campaign to encourage patients to rethink how they donate health data. Garth Callaghan, a PatientsLikeMe member, kidney cancer fighter and author of Napkin Notes, shared his inspiration along the way.

Partnerships
We’re partnering up with even more people who believe in patient-centered healthcare. Here are some of the new friends we met in 2014 and are excited to be working with:

  • One Mind to help the millions of people worldwide who are experiencing post-traumatic stress (PTS) or traumatic brain injury (TBI), or both.
  • Actelion to create a new patient-reported outcomes tool for the rare form of non-Hodgkin’s lymphoma called MF-CTCL.
  • Cancer Treatment Centers of America (CTCA) at Eastern Regional Medical Center (Eastern) to help ease patients’ transitions from cancer treatment to survivorship.
  • LUNGevity Foundation, to help people diagnosed with lung cancer. LUNGevity will become the first nonprofit to integrate and display dynamic data from PatientsLikeMe on its own website.
  • USF Health to improve health outcomes for multiple myeloma patients. The partnership is PatientsLikeMe’s first with an academic health center.
  • Schwartz Center for Compassionate Healthcare to better understand patients’ perceptions of compassionate care and strengthen the relationship between patients and their healthcare providers.
  • Sage Bionetworks on a new crowdsourced study to develop voice analysis tools that both researchers and people with Parkinson’s disease (PD) can use to track PD disease progression.
  • Genentech (a member of the Roche Group) to explore use of PatientsLikeMe’s Global Network Access, a new service for pharmaceutical companies that delivers a range of data, research and tools to help researchers develop innovative ways of researching patients’ real-world experience with disease and treatment.

Out of the office
We’re always looking for ways to get out into the community and get involved out of the office, whether speaking to the FDA or simply helping out at a volunteer event. Here’s some of where we were in in 2014:

In the news
And here are some of the highlights from PatientsLikeMe in the media in 2014:

For more PatientsLikeMe media coverage, visit our Newsroom.

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Out of the Office: PatientsLikeMe team spreads the word for Lung Cancer Awareness Month

Posted November 12th, 2014 by

Hi all! I’m Kara, a member of the Community team at PatientsLikeMe and the moderator for our lung cancer community. November is Lung Cancer Awareness Month, and what better way to kick it off than to join a fantastic group in raising awareness for this often overlooked condition. Along with some fellow PatientsLikeMe staffers — and little Hugo, our French Bulldog mascot for the day — I recently had the pleasure of walking at the LUNGevity Foundation’s ninth annual Breathe Deep Boston 5K Walk on Nov. 1, 2014.

Rain and winds couldn’t keep us away from Carson Beach in South Boston that Saturday morning as we laced up our sneakers to join Boston area survivors and families as they walked to show their support for those living with lung cancer and honor loved ones who are no longer with us.

Bill Shields, WBZ-TV reporter and Boston area resident, emceed the event. Shields is a lung cancer survivor himself and shared his personal story with the crowd. By far, the biggest highlight of our day was hearing the many touching stories, whether it was Shields or other advocates speaking to the crowd, survivors sharing stories huddled over hot cocoa or loved ones proudly displaying their personal motivations for walking emblazoned on “I walk for _______” t-shirts or in stories written along the walls of the Sign-In tents. Check out some additional photos from the event on LUNGevity’s Flickr account.

Walking in the Breathe Deep 5K was just one small way to do our part to help shine a spotlight on lung cancer, show our support for survivors and help improve research funding for future patients. Everyone was out, not just supporting a great cause, but showing the power of people working together. This camaraderie and dedication to change is something I feel privileged to see in our growing lung cancer community on PatientsLikeMe, where members are working every day to raise awareness, share experiences to advance medical research, and help one another live better, together.

PatientsLikeMe member KaraSmith

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