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… Continue reading PatientsLikeMe member Tam builds first-ever ‘by patients, for patients’ health measure on the Open Research Exchange
Category: Patient Experiences
What do you know about cervical cancer?
January is Cervical Health Awareness Month, but it’s not just a month to learn more about cervical cancer, it’s about learning how to prevent it. Since the 1950s, there’s been in increased effort to raise awareness for prevention screening, and from 1955 to 1992, the cervical cancer incidence and death rates declined by 60 percent.1… Continue reading What do you know about cervical cancer?
PatientsLikeMe members to be highlighted in patient empowerment webinar
Many PatientsLikeMe members talk openly about the reasons why they donate their health data and why they believe patient-centered healthcare means better healthcare for all. And just a week from now, two of them will be sharing their stories with everyone in a live webinar. On Tuesday, January 20th, at 2:00pm EST, the Partnership to… Continue reading PatientsLikeMe members to be highlighted in patient empowerment webinar
The Patient Voice- MS member Jackie shares her story
When Jackie was diagnosed with multiple sclerosis after a long, exhausting process, she struggled with a fear of the unknown and had no idea what she would be facing. But then she connected with the thousands of MS members on PatientsLikeMe. Jackie shared with the community about how she felt her current medication was… Continue reading The Patient Voice- MS member Jackie shares her story
“I continue to be inspired by those who share this fight with me” – PatientsLikeMe member Doug shares his journey with HP
Meet Doug. He’s part of the pulmonary fibrosis (PF) community on PatientsLikeMe and is living with a condition specifically known as chronic hypersensitivity pneumonitis (HP). It’s similar to other types of PF, but also has its differences. We caught up with Doug for an interview to help spread the knowledge about these two conditions, but… Continue reading “I continue to be inspired by those who share this fight with me” – PatientsLikeMe member Doug shares his journey with HP
Open funding for open science to accelerate ALS research: An interview with Prize4Life CEO Shay Rishoni
Just about a year ago, we teamed up with Sage Bionetworks and TED Fellow Dr. Max Little for an ongoing Parkinson’s disease (PD) project called the Patient Voice Analysis (PVA). The big idea: combine data from two sources – phone-based voice recordings and patient reported data from PatientsLikeMe’s Parkinson’s Disease Rating Scale (PDRS). Then,… Continue reading Open funding for open science to accelerate ALS research: An interview with Prize4Life CEO Shay Rishoni
2014 recap – part II
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… Continue reading 2014 recap – part II
“…about 10,000 baby boomers are turning 65 every day…” – An interview with Dr. Sarika Aggarwal
Sarika Aggarwal, M.D. is Executive Vice President and Chief Medical Officer at Fallon Health, and it’s her job to make sure all plan members get appropriate, effective and high-quality care. We caught up with Dr. Aggarwal for an interview, and she talks about how she came to spend the last 26 years practicing medicine in… Continue reading “…about 10,000 baby boomers are turning 65 every day…” – An interview with Dr. Sarika Aggarwal
2014 recap – a year of sharing in the PatientsLikeMe community
Another year has come and gone here at PatientsLikeMe, and as we started to look back at who’s shared their experiences, we were quite simply amazed. More than 30 members living with 9 different conditions opened up for a blog interview in 2014. But that’s just the start. Others have shared about their health journeys… Continue reading 2014 recap – a year of sharing in the PatientsLikeMe community
The Patient Voice: Garth shares his cancer story for 24 Days of Giving
After Garth was diagnosed with cancer, he made a promise to his daughter Emma: he would write 826 napkin notes so she had one each day in her lunch until she graduated high school. “In the beginning they never had a deep meaning. They were generally just notes of reminders. ‘I love you’ or ‘Have… Continue reading The Patient Voice: Garth shares his cancer story for 24 Days of Giving