#WorldOrphanUSA looking forward to hanging out with some like-minded individuals focused on #RareDisease and patient-driven care tonight. Come chill with us at @LenoxHotel Solas bar, 5-7pm! @foliahealth
Enjoyed this dynamic conversation - will say that the title of this turned out kinda weird! Check it out if you're interested in some very plainspoken discussion on what we need to do for individuals to receive personalized care.
@NellMLuo was featured on the @HealthAmericana podcast! Check it out - hard-hitting discussion on what we really need to do for individuals to be able to live their lives with a lesser burden from chronic conditions. #patientsarepeople#datadrivencare https://t.co/ZgbyCWZhMF
Pharmaceutical company: Here’s an ad for our life-saving medication
Me: Wow can I buy it?
PC: No, only a doctor can prescribe it
Me: Can I suggest it to my doctor?
PC: No, they will be very mad that you did any research into your condition whatsoever, but plz enjoy our ad :)
Broken English is a sign of courage and intelligence and it would be nice if more people remembered that when interacting with immigrants and refugees.
So excited for this new capability! I've already personally been able to view data from my latest clinic visit that wasn't easily visible from my patient portal, and I could see it next to my own tracked data. Check it out! #powertothepatient#interoperable
With our new Zipline product, you can see your own home-tracked notes...right alongside your EMR data.
Check your email to grab one of the Beta spots and pioneer this new way to track, visualize, & understand your health.
#yourknowledgematters#interoperability#patientownership
@PierreKory Observational research is the way of the future - especially as we think about issues like treatment burden alleviation. Check out this awesome study from the team at @foliahealth: https://t.co/BvS1OPLMBd
@stevesilberman@abbys480 Next step for CF: figuring out how to safely decrease the burden of treatment for those who are doing great on #Trikafta. (Awesome study looking at this: https://t.co/BvS1OPLMBd) #cysticfibrosis
Deeply tragic. Upshot here is we shouldn’t be randomizing patients to placebo when the outcome is certain death. We should use natural history models and synthetic control arms in these settings instead of obligating a placebo arm to a known, fatal outcome https://t.co/1C5qfV2wrv