2 posts tagged “CTCA”

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.

Share this post on Twitter and help spread the word.


PatientsLikeMe and Cancer Treatment Centers of America Eastern team up to support survivors

Posted October 8th, 2014 by

Online Network Connects Patients, Offers Valuable Information and Tools

CAMBRIDGE, Mass.—October 8, 2014PatientsLikeMe and Cancer Treatment Centers of America (CTCA) at Eastern Regional Medical Center (Eastern) have joined forces to help ease patients’ transitions from cancer treatment to survivorship. The collaborative effort is designed to give patients undergoing or completing treatment direct access to a powerful online network for daily support, information and tools.

Offering a comprehensive, fully integrated approach to cancer treatment, CTCA at Eastern sees patients from around the world. “Since so many of our patients are from out of town, it’s incredibly important that we connect them with resources that extend their support and care when they go back home,” said Vice President of Marketing John Goodchild. “PatientsLikeMe will be an important addition to what we do and a way for our patients to not only get great support and services, but to contribute data that could prove valuable for future cancer research.”

PatientsLikeMe’s Executive Vice President of Marketing and Patient Advocacy Michael Evers said CTCA at Eastern and its clinicians will be helping patients access one of the most powerful and active patient networks online. “Our members share information about how they’re managing their condition and actively contribute insights and data to help others and advance research. We’re excited to welcome the CTCA community to PatientsLikeMe. Together, we’ll give everyone the support, tools and services they need to be fully empowered on their journey with cancer.”

The relationship with CTCA Eastern is the latest in PatientsLikeMe’s expansion in cancer, which began earlier this year with an agreement with Genentech. PatientsLikeMe welcomes anyone living with cancer to join the community.

About PatientsLikeMe
PatientsLikeMe® (www.patientslikeme.com) is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services and care. With more than 250,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 50 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

About Cancer Treatment Centers of America
Cancer Treatment Centers of America, Inc. (CTCA) is a national network of five hospitals that specialize in the treatment of patients fighting complex or advanced-stage cancer. CTCA offers an integrative approach to cancer treatment that combines surgery, radiation, and chemotherapy with nutritional counseling, naturopathic medicine, mind-body therapy, and spiritual support to enhance quality of life and minimize side effects during treatment. The company serves patients from all 50 states at hospitals located in Atlanta, Chicago, Philadelphia, Phoenix and Tulsa. Known for delivering the Mother Standard® of care and Patient Empowerment Medicine®, CTCA provides patients with comprehensive information about their treatment options so they can participate in their treatment decisions. For more information about CTCA, go to www.cancercenter.com.

Contacts
Julia Scherer
Cancer Treatment Centers of America
Julia.scherer@ctca-hope.com
215.537.7469

Margot Carlson Delogne
PatientsLikeMe
mcdelogne@patientslikeme.com
781.492.1039