Right at the start of April, you might have seen us post on the blog that it’s Parkinson’s (PD) Awareness Month. And to keep Parkinson’s awareness going strong all month long, we’re sharing a recent interview with PatientsLikeMe member Betty – aka dropsies to those in the community. She was diagnosed with Parkinson’s back in… Continue reading “I would just like to understand the ‘why’” – a conversation with PD community member dropsies
Category: Patient Experiences
A new collaboration and the work ahead: An interview with PatientsLikeMe Co-founder and President Ben Heywood
Earlier this week, PatientsLikeMe announced a five-year collaboration with Genentech. Our goal? To bring your experience – the patient experience – to a company that wants to learn more from the people who are living with serious diseases, and to better integrate your insights into their decision-making as they develop new medicines. PatientsLikeMe Co-founder and… Continue reading A new collaboration and the work ahead: An interview with PatientsLikeMe Co-founder and President Ben Heywood
Genentech and PatientsLikeMe enter patient-centric research collaboration
Companies Sign Multi-Year Services and Data Subscription Agreement With Initial Focus on Oncology CAMBRIDGE, Mass. — April 7, 2014 — PatientsLikeMe announced today a five-year agreement with Genentech, a member of the Roche Group (SIX: RO, ROG; OTCQX: RHHBY), to explore use of PatientsLikeMe’s global online patient network to develop innovative ways of researching patients’ real-world… Continue reading Genentech and PatientsLikeMe enter patient-centric research collaboration
Patients as Partners: The WHYSTOP Scale questionnaire results
We’re really excited to launch a new series here on the blog called Patients as Partners. The series will highlight the results and feedback that PatientsLikeMe members give on questionnaires from our Open Research Exchange (ORE) platform. What’s ORE all about again? PatientsLikeMe’s ORE platform gives patients the chance to not only check an answer… Continue reading Patients as Partners: The WHYSTOP Scale questionnaire results
PatientsLikeMe invites patients to lead research projects on Open Research Exchange
New $2.4 Million Grant from the Robert Wood Johnson Foundation Supports Two Patient-Led Projects in 2014 to Develop, Test and Validate Patient-Reported Outcomes CAMBRIDGE, Mass.—March 27, 2014—Expanding on its mission to put patients at the center of clinical research, PatientsLikeMe today announced that patients can now apply to lead the development of new health outcome… Continue reading PatientsLikeMe invites patients to lead research projects on Open Research Exchange
“Pay it forward.” Following up with idiopathic pulmonary fibrosis patient and PatientsLikeMe member Lori
This is Lori’s third interview on the PatientsLikeMe blog! She’s been sharing her journey with idiopathic pulmonary fibrosis (a rare lung disease) with all of our followers here, along with her real-world health experiences on her PatientsLikeMe profile. Since the last time we caught up with her, Lori has lost 70 lbs., has made… Continue reading “Pay it forward.” Following up with idiopathic pulmonary fibrosis patient and PatientsLikeMe member Lori
Diabetes, behavioral changes and a surprise donation: An interview with Melinda Maryniuk, MEd, RD, CDE, FADA
Diabetes Alert Day is just around the corner, and to get a jump start on raising awareness for this chronic condition, we recently caught up with Melinda Maryniuk. She’s the Director of Clinical Education Programs for the Joslin Health Solutions division within Joslin Diabetes Center. Her areas of special interest include nutrition, patient education, behavior… Continue reading Diabetes, behavioral changes and a surprise donation: An interview with Melinda Maryniuk, MEd, RD, CDE, FADA
“Myeloma has not affected my day-to-day life” – PatientsLikeMe member AbeSapien shares his experience during Multiple Myeloma Awareness Month
March is Multiple Myeloma Awareness Month, and to keep the awareness going strong, we’re sharing our recent interview with PatientsLikeMe myeloma community member Bob, also known as AbeSapien. The happily-married, long-time data processing expert spoke about his diagnosis experience with myeloma, the economic effects of his condition and his passion for horseback riding. … Continue reading “Myeloma has not affected my day-to-day life” – PatientsLikeMe member AbeSapien shares his experience during Multiple Myeloma Awareness Month
“Life is good” – PatientsLikeMe community member John_R speaks about his new life after being diagnosed with pulmonary fibrosis
Several people in the PatientsLikeMe community use the phrase “new normal” after being diagnosed with pulmonary fibrosis (PF), and PF member John_R doesn’t’ think his new normal is all bad. This month, he chatted with us about getting diagnosed with PF, bringing oxygen to the workplace, and how living with his Sweetie keeps him focused… Continue reading “Life is good” – PatientsLikeMe community member John_R speaks about his new life after being diagnosed with pulmonary fibrosis
PatientsLikeMe launches “Data for Good” campaign to encourage health data sharing to advance medicine
Public Service Announcement-Style Video Calls Patients to “Donate Your Data for You. For Others. For Good” CAMBRIDGE, MA – March 10, 2014 – Today, PatientsLikeMe kicks off a new campaign promoting the value of sharing health information to advance research. In a series of public service announcement-style videos, the company highlights a movement called “data… Continue reading PatientsLikeMe launches “Data for Good” campaign to encourage health data sharing to advance medicine