Do you feel you’re getting the best possible care from your doctor? In two recent studies, PatientsLikeMe members answered this question and shared their perspectives on the health care they’re receiving. The results show that while patient opinions about care and provider performance vary according to condition, diverse patient groups agree on the top factors that define… Continue reading Defining “good” health care: 2 new studies reveal patient perspectives
Category: Research
Confessions of a research study addict: “It’s powerful to use a devastating diagnosis for good.”
Elizabeth is a member of the 2018 Team of Advisors living with MS and a self-described research addict. Here’s what she had to say about her experience contributing to research and why “it’s powerful to use a devastating diagnosis for good.” I’ve always been a sucker for a focus group. Give me some free pizza… Continue reading Confessions of a research study addict: “It’s powerful to use a devastating diagnosis for good.”
The lowdown on generic MS medications
From FDA approvals to availability and safety, generic drugs are a popular topic in the PatientsLikeMe MS forum (more than 15 threads!). To help you stay in the loop about what generics are and what’s out there for MS, we checked in with our team of in-house health professionals. Here’s the scoop… Let’s start with… Continue reading The lowdown on generic MS medications
Behind the scenes at PatientsLikeMe! Take a peek at user research (aka usability testing)
Have you noticed changes on PatientsLikeMe in the past year? (We’re guessing you’ve spotted quite a few.) Did you know that we involve members in testing out various features or updates to the site before rolling them out? We do! Member Barbara’s user research session with Kris Engdahl, principal user researcher (left), and Nicole Barron,… Continue reading Behind the scenes at PatientsLikeMe! Take a peek at user research (aka usability testing)
Lupus flares: Stats and infographics based on the PatientsLikeMe community’s experiences
Lupus flares are hard to define. In fact, there wasn’t a clear clinical definition of flares until 2010 (and even that definition is pretty broad). If you’re living with lupus, how would you define a flare? What do you experience during one? To gain a deeper understanding of flares from the patient perspective, the PatientsLikeMe research team… Continue reading Lupus flares: Stats and infographics based on the PatientsLikeMe community’s experiences
Circadian rhythms and health: What’s the connection?
More than 3,600 PatientsLikeme members are living with insomnia, and 100+ report a circadian rhythm disorder. In October, three researchers won the Nobel Prize for their work examining the relationship between sleep, circadian rhythms and health. So with Daylight Saving Time just behind us, we’re bringing you more info about the “body clock” and how it can affect health.… Continue reading Circadian rhythms and health: What’s the connection?
Marijuana and MS: Get the scoop
From legality to availability, recreational use and potential use as treatment, marijuana is a hot topic. In the MS forum, members are talking about marijuana and its potential to relieve symptoms of MS like pain, tremor and spasticity. We wanted to know more, so we asked our Health Data Integrity team to take a look… Continue reading Marijuana and MS: Get the scoop
Sleeping with a health condition
The elusive “good night’s sleep.” Does it exist? Or is a bad night’s sleep the norm? Catching enough Zzzs can be complicated, especially when you’re living with a chronic illness. So, how can lack of sleep impact your health? Take a look at the results from a study we did with 5,200+ members of the… Continue reading Sleeping with a health condition
Want to know more about Radicava (edaravone)? Here’s a snapshot:
With the recent FDA approval of Radicava (edaravone), we wanted to know more about how it works and what it means for patients living with ALS. We asked Maria Lowe, Pharm.D., BCPS, and our Health Data Integrity team, to give us a snapshot of the drug, how it’s used and what you should know. Maria’s rundown… Continue reading Want to know more about Radicava (edaravone)? Here’s a snapshot:
It’s Clinical Trials Day, and patients are driving change
Today is Clinical Trials Day – celebrated to bring more attention to public health and also to recognize the contribution of the patients and healthcare professionals who make clinical research possible. At PatientsLikeMe, it’s members who are changing the way clinical trials are designed. Bringing the patient voice to clinical trials has long been part… Continue reading It’s Clinical Trials Day, and patients are driving change