Dreamer, optimist, healthcare nerd, sister, partner, mom, unreasonably lucky. #powertothepatient CEO @foliahealth
Boston, MA
Joined November 2019
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#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
Nell Meosky Luo retweeted
Thanks to our friends at @foliahealth and @TbdAngels as some of the first startups and investment groups to take advantage of these features!
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 apple.co/3NQAEls
I'm finding that being a parent has opened up a new type of empathy - crises like the Ukraine invasion hit differently now. #Ukraine #PeaceNotWar
Nell Meosky Luo retweeted
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 :)
Happy victory Monday, folks #BillsMafia
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
Nell Meosky Luo retweeted
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 statnews.com/2021/08/19/biog…
Nell Meosky Luo retweeted
I have one ask: don’t ever feel bad for me because I have ALS. We all carry burdens.
Instead, join me in changing ALS from terminal to chronic and let me know how I can help lessen your burden.
That is how we change the world.
Good night moon.
Nell Meosky Luo retweeted
Striking. 12 months after their symptoms started, only 23% of Covid patients in a new study from Germany were completely free of symptoms.
Amen! Why not?
Open progress notes.
Open test test results.
Open EVERYTHING.
@G17Esiason talks with @TheLizArmy on the State of Health podcast about what the @ONC_HealthIT Cures Rule might mean for patients and clinicians.
#opennotes
Nell Meosky Luo retweeted
I love cold pitches. But a surefire way not to get funding from @January_VC is to start it with: "Dear Sirs..."
What a strange headline: on.wsj.com/3zODQH8 The good leaders always expected - encouraged! - team members to value their personal lives and be relatively autonomous. Career != Life definition @WSJ #returntooffice
1/3: Re: #Aducanumab, let's take the dialogue up a level from the finger-pointing and look at some well-reasoned, published opinions on both sides of the issue...
2/3: Free, full-text, in support of approval: bit.ly/3w0pKQC
Behind a paywall unfortunately, not in support: bit.ly/3pzpDsI
3/3: My take: there's obviously benefit here for some, depending on dose & when therapy is started. When you find this for a devastating disease like #Alzheimers , #ALS , etc, approval conditioned on addn'l studies is best for patients. But 9 yrs is too long. #FDAapproves
Lots of FDA decision-making this week! My 2c on the Verily Parkinson's decision - can't assume that passive, device-based tracking is able to express the same level of detail on patient outcomes as direct, patient-reported data. endpts.com/fda-rejects-googl… #Parkinsons #patientled
Nell Meosky Luo retweeted
Excited HERO-2 is launching today. Loved playing a small role in this.
CF patients and parents: learn how to enroll in this novel observational study below
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Today, we announced the initiation of the HERO-2: Home Reported Outcomes Study, a first-of-its-kind, at-home observational study that aims to look at the outcomes people with #cysticfibrosis experience while taking Trikafta. cff.org/About-Us/Media-Cente…
