Back in March last year, we shared on the blog about a new grant from the Robert Wood Johnson Foundation that would help support two patient-led projects on our Open Research Exchange (ORE) , a platform that brings patients and researchers together to develop the most effective tools for measuring disease. We were overwhelmed by the response from the community, and we’re excited to share that one of those projects is very close to being completed.
Tam is living with multiple sclerosis (MS), and she’s been a PatientsLikeMe member for more than 4 years. After her diagnosis and experiences with her doctors not “getting” what pain means to her, Tam decided to create a new tool for anyone who might be experiencing chronic pain. Her idea is to build a measure that can help doctors better understand and communicate with patients about pain.
Watch her video above to learn about her journey and listen to her explain her inspiration behind the new ORE project.
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- Filed Under: Multiple Sclerosis, Patient Experiences
- Tags: chronic, chronic pain, community, exchange, health, health measure, led, measure, multiple, multiple sclerosis, open, Open Research Exchange, ORE, pain, patient, patient-led, patients, Research, sclerosis, sharing, Tam
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.
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.
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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- Filed Under: Patient Experiences
- Tags: 24, 24 days of giving, Actelion, Advisors, Ben, Callaghan, Cancer Treatment Centers of America, CTCA, data, data for good, days, exchange, for, Garth, Genentech, giving, good, Heywood, in, Jamie, Kara Smith, LUNGevity Foundation, Motion, Napkin, Napkin Notes, Notes, of, One Mind, open, Open Research Exchange, ORE, PatientsLikeMe, PatientsLikeMeInMotion, patient_interview, Pete Frate, pff, Research, Roche Group, Sage Bionetworks, sally okun, Schwartz Center, Schwartz Center for Compassionate Healthcare, Team, Team of Advisors, USF Health