3 posts tagged “Callaghan”

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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Join Garth Callaghan for 24 Days of Giving

Posted December 2nd, 2014 by

Today’s the day we start to re-think what it means to give back, and we want you to come along with us. We’re kicking off 24 Days of Giving – a new campaign that’s all about the health data PatientsLikeMe members selflessly donate and how we can say thank you.

Today is also known as Giving Tuesday – a day that celebrates generosity. We’re hoping that after you celebrate by giving a donation of time or money to your favorite non-profit, you’ll consider coming back to PatientsLikeMe to donate your data. For every piece of health data you share on PatientsLikeMe over the next 24 days, we’re going to donate up to $20,000 to Make-A-Wish® Massachusetts and Rhode Island to help fund life-affirming wishes for seriously ill children.

Not a PatientsLikeMe member yet? Join the community and start donating your #dataforgood. Already a member? Head to your 3-stars page to make an update and data donation.

Leading the charge- Garth Callaghan (@NapkinNotesDad)

Some of you might know Garth as the Napkin Notes Dad. He’s been diagnosed with cancer four times and may not live long enough to watch his daughter Emma graduate from high school. But he doesn’t dwell on that. Garth takes each day as a gift and has fulfilled a promise he made to write 826 napkin notes. Emma will have one waiting for her in every lunch until the day she graduates.

Garth’s personal legacy is his words, and on PatientsLikeMe, his medical legacy is his data. He’s sharing his experiences in the hopes that others can learn from his journey and help fight their own battles better.

“It certainly doesn’t help me to keep my symptoms or my side-effects secret. I feel that I owe other patients my experience. If I donate my data, if I share with an organization that can put it together and see a pattern … I’m helping all of the patients.”

We’ll keep everyone updated on the 24 Days of Giving drive, so keep an eye on our
PatientsLikeMe Twitter and Facebook. Want to share about the data you’ve donated with others on social? Use the hashtag, #24DaysofGiving.

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