Search the KHIT Blog

Sunday, May 6, 2018

"All of Us?" "Personalized Medicine?"

The grief at our house is pretty heavy, but I just can't withdraw from the world. Hence this Twitter exchange.

Worth looking into.

After surfing through a lot of the website, I conclude that a lot of the critical Twitter responses are ill-informed and unhelpfully cynical. The pedigrees of the leadership and the IRB (Institutional Review Board) look fine to me (including contributors with explicit "medical ethics" chops).

I like that they include factors that we call "social determinants of health."
What is Precision Medicine?
The All of Us Research Program is part of the Precision Medicine Initiative. Precision medicine is health care that is based on you as an individual. It takes into account factors like where you live, what you do, and your family health history. Precision medicine’s goal is to be able to tell people the best ways to stay healthy. If someone does get sick, precision medicine may help health care teams find the treatment that will work best. This will help give health care providers the information they need to make tailored recommendations, relevant to people of different backgrounds, ages, or regions.
Two books I have in (admittedly halting) progress these days go to social determinants:

I first cited the Matthew Walker book here. Wrote about Dr. Pfeffer's "Leadership BS" book prior to that.

Another book in progress:

Goes to my recurrent "Art of Medicine?" riffs.


From Scientific American:

Can the U.S. Get 1 Million People to Volunteer Their Genomes?
A massive biobank effort, first planned under the Obama administration, launches this week

One of the enduring mysteries of medicine is how individual genes, environment and lifestyle may combine to spark sickness or protect us from it. Unraveling this puzzle remains essential for scientists hoping to achieve the elusive goal of offering tailored treatments or personalized prevention plans.

That’s why Pres. Barack Obama in 2015 announced an ambitious plan to roll out a precision medicine initiative that would aim to enroll a diverse group of one million people. Participants would volunteer, either via their doctors or by signing up online, to submit their medical records to the National Institutes of Health. They would also fill out online surveys about their lifestyles, furnish blood and urine samples, and have their genomes sequenced. Later they might also offer other biological data or even wear health trackers that may not yet exist. Researchers—and members of the public—could apply for access to the anonymized patient data and track individuals’ health outcomes, hopefully gleaning insights about how our individual differences affect health and disease risk.

Three years after unveiling that audacious effort—rebranded as “All of Us” about a year ago—it is only now officially getting off the ground. No genomes have yet been sequenced. Instead, federal workers and clinic partners have enrolled “beta testers” in a pilot phase of the project. About 26,000 volunteers have provided blood or urine samples, and filed out surveys about their health care...
We shall see. I'm considering signing up.

Tangentially apropos (?), see "Susannah Fox on the power of peer-to-peer communities for health." See also "There IS no personalized medicine without AI."

Having a coronary angiogram px Tuesday morning. Thrilled. Precursor to the SAVR px that draws nigh for me.


My cardiologist joked after the px that I have "the arteries of an 18 yr. old." Wonder how much of that goes to my decades-long delusional full-court hoops gym rat obsession? No blockages, no need for stents, no need for bypasses.

It was interesting. Fentanyl sedation (wow). He went in through my right wrist, not the femoral artery. That shortened my post-op recovery by several hours.

A bit of good news for a change (notwithstanding that I still have to do an aortic valve replacement px soon, TBD).

More to come...

No comments:

Post a Comment