Hi everyone! I’m Sally Okun, Vice President for Advocacy, Policy and Patient Safety at PatientsLikeMe. Most of you probably already know me, but just in case you don’t, I really focus on bringing the patient voice to affect better treatment, services and care, and to be sure that the needs of patients are at the… Continue reading What’s your experience with accessing your electronic medical records?
Tag: Research
Your data doing good: IPF treatment experiences
Every minute of every day, people are sharing their health data on PatientsLikeMe. Some of you are focused on tracking how you’re doing over time. Many want to make sure the next person diagnosed can learn from your experience. All are contributing to the greater good, because what you share helps researchers see what patients… Continue reading Your data doing good: IPF treatment experiences
Your data doing good: The Fitbit study
When you share your health data, we all learn During #24DaysofGiving this December, we’ll highlight some of the most important things we’ve learned from data that members have selflessly shared, and all the good data donation is doing. One example is the Fitbit study we partnered with Biogen on earlier this year. Nearly 250 members… Continue reading Your data doing good: The Fitbit study
A patient’s perspective: member Gary reports back from the FDA public meeting on Parkinson’s disease
Back in September, Sally Okun, Vice President of Advocacy, Policy and Patient Safety, and community moderator Molly Cotter, attended the FDA public meeting on Parkinson’s disease (PD) along with PatientsLikeMe member Gary (tupelo). We posted some interesting developments from the meeting in the forum, but we also caught up with Gary for his perspective on… Continue reading A patient’s perspective: member Gary reports back from the FDA public meeting on Parkinson’s disease
Tackling brain illness, together
Our partners at One Mind are advocating for a better understanding of the brain in general, and they’ve narrowed it down to a single statement: Our brains need answers. And that’s why they launched the “Needs” campaign story, underneath the hashtag #BrainsNeedAnswers. Think about it – what does your brain, or the brain of a… Continue reading Tackling brain illness, together
Throwback Thursday: Diabetes and stress
Just about two years ago, nearly 600 members of the PatientsLikeMe community completed a survey called the Diabetes Distress Scale (DDS), a 17-item questionnaire which measures the amount and types of problems diabetes can cause in a person’s life. And today, we’re throwing it back to the summary of the results. Here’s what Dr. William Polonsky,… Continue reading Throwback Thursday: Diabetes and stress
ORE Researcher Series: Dr. Larry Alphs Talks PROs and Depression
Dr. Larry Alphs, the Therapeutic Area Leader in Psychiatry for Janssen Pharmaceuticals, shared about his research as part of PatientsLikeMe’s ORE Researcher Series. You’ve already listened to Dr. Tamara Kear and the McMaster University researchers – click below to watch Dr. Alphs speak about a new drug that could eventually treat suicidal thoughts. … Continue reading ORE Researcher Series: Dr. Larry Alphs Talks PROs and Depression
ORE Researcher Series: McMaster University
Last month, you met ORE researcher Tamara Kear, PhD., R.N., CNS, CNN, and you listened to her talk about her research on hypertension, one of the factors that can lead to a person developing kidney disease. Today, we’re introducing McMaster University Professor Gordon Guyatt and students Melody Ren and Reza Mirzaie. The question they are asking is… Continue reading ORE Researcher Series: McMaster University
ORE Researcher Series: Tamara Kear is listening to kidney patients
Over the next few months, you’ll meet a few Open Research Exchange (ORE) researchers, and first up is Tamara Kear, PhD., R.N., CNS, CNN. She has over 20 years’ practice as a nurse caring for patients with kidney disease. Her research is focused on hypertension, one of the factors that can lead to a person… Continue reading ORE Researcher Series: Tamara Kear is listening to kidney patients
Sally Okun explains the new research collaboration with the FDA
Yesterday, we announced a new research collaboration with the U.S. Food and Drug Administration (FDA) that will explore how patient-reported data can lead to new insights about drug safety. It’s the first time the FDA will analyze patient-generated data for pharmacovigilence (aka drug safety). But we’re no strangers to drug safety. Check out some of… Continue reading Sally Okun explains the new research collaboration with the FDA