Earlier this year, more than 450 PatientsLikeMe members from the type 1 and type 2 diabetes communities took part in a new survey from our partners at Kaiser Permanente Colorado’s Institute of Health Research. (Thank you all for adding your voices!) Members shared about everything from the day-to-day challenges of living with diabetes to the… Continue reading Results! PatientsLikeMe diabetes members share about challenges and concerns
Tag: Research
Research, support and hope for spinal muscular atrophy
If you know PatientsLikeMe, you know that neurological conditions take us all the way back to our beginning. Stephen Heywood, the brother of our founders Ben and Jamie, was diagnosed with ALS back in 1998 at age 29. Today, almost ten years after PatientsLikeMe was created, thousands of members living with ALS and other neurological… Continue reading Research, support and hope for spinal muscular atrophy
Patients as Partners: Managing High Blood Pressure questionnaire results
In this installment of our Patients as Partners blog series, we’re sharing results from the High Blood Pressure Management, Adherence, Attitudes and Health Behavior Instrument – whew, that’s a mouthful! Doctors and nurses can use the instrument to better understand how people manage high blood pressure at home, and can help everyone learn more about… Continue reading Patients as Partners: Managing High Blood Pressure questionnaire results
Speaking up for hope during ALS Awareness Month
May is just a few days away, and we wanted to get a jump-start on spreading the word for Amyotrophic Lateral Sclerosis (ALS) Awareness Month. As many out there might know, PatientsLikeMe was founded on the life experiences of brothers Stephen, Ben and Jamie Heywood. In 1998, Stephen was diagnosed with ALS and his brothers… Continue reading Speaking up for hope during ALS Awareness Month
Patients as Partners: The Perceived Medical Condition Self-Management Scale questionnaire results
Back at the beginning of April, we launched a new blog series called Patients as Partners that highlights the results and feedback PatientsLikeMe members give to questionnaires on our Open Research Exchange (ORE) platform. This time around, we’re sharing the results of the Perceived Medical Condition Self-Management Scale (PMCSMS), a health measure that looks at… Continue reading Patients as Partners: The Perceived Medical Condition Self-Management Scale questionnaire results
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
PatientsLikeMe and Sage Bionetworks launch open science study for people with Parkinson’s Disease
Companies Partner With TED Fellow Dr. Max Little to Map the Severity of the Disease CAMBRIDGE, Mass.— February 5, 2014—PatientsLikeMe and the nonprofit research organization Sage Bionetworks announced today the launch of a new crowdsourced study to develop voice analysis tools that both researchers and people with Parkinson’s disease (PD) can use to track PD… Continue reading PatientsLikeMe and Sage Bionetworks launch open science study for people with Parkinson’s Disease
PatientsLikeMe Out of the Office: Priya Raja talks about cervical cancer awareness
Hi there everyone, my name is Priya and I work as a research assistant on the Health Data Integrity Team at PatientsLikeMe! Given that it’s cervical cancer awareness month, I wanted to share with you all a global perspective on why screening can be so important. While a Pap smear is something that most women… Continue reading PatientsLikeMe Out of the Office: Priya Raja talks about cervical cancer awareness
“We can and will do better” – An interview on pulmonary fibrosis with Dr. Jeff Swigris
Just this past month, a few members of the PatientsLikeMe Team (Arianne, Dave and Rishi) traveled to La Jolla, CA for the Pulmonary Fibrosis Foundation Summit. It was quite the mixed crowd (with patients, clinicians and researchers), and it gave them (and everyone at PatientsLikeMe) a chance to learn more about pulmonary fibrosis (PF) from… Continue reading “We can and will do better” – An interview on pulmonary fibrosis with Dr. Jeff Swigris