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"The Patient Will See You Now"

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My review of this book:

My Body, My Data. Welcome To "The iMedicine Galaxy"

When I met with dying Steve Jobs, I knew nothing about genomics. But I knew a thing or two about patronizing doctors and grey areas of ethics in the field of organ replacement medicine. I had been working with surgeons in the USA and in Europe. I also knew that Steve Jobs' liver transplant in 2009 wouldn't save his life forever, as the immunosuppressive drugs he had to take daily would probably cause his cancer to come back. You see, a transplant is not a cure. Steve Jobs at the end of his life was fascinated by genomic precision medicine: get to know your genome, monitor and own you own medical data, become the C.E.O. of your health. "Yes, Sir, but how do I get to do that?" 

I clearly remember Steve Jobs' answer to my question (early 2011): "Follow Eric Topol on twitter and Eric Lander PhD's MIT MOOC in genomics." 

I did both. Earned myself two MITx certificates in genomics (no prior scientific background), have been spying on Eric Topol's twitter account for years, day after day after day. I cannot thank him (and his dream team at Scripps) enough for this book, as its provides the reader with all the information enclosed in countless tweets over the years, adding something essential in the process: slices of life that patients had been willing to share, through him, with us. 

I cannot thank Eric Tool (and his dream team at Scripps) enough for this book, as its provides the reader with all manner of scientific information on personalized medicine, a whole variety of charts allowing us to get some closer and nuanced insight about complex matters in the blink of an eye, adding something essential in the process: slices of life that patients had been willing to share with us. Spoiler alert: you will read about Angelina Jolie’s choice, gaining an insider view. 

What this book does best is that it connects all the dots. My body, my data, right? What's less obvious is how we are going to do that. Putting the patient at the center of the health care system? "Evidence VS eminence-based medicine?" It has never been achieved before. Where are the medical data brokers? Will they work for conglomerates or for the patients? Will they sell our data without our consent? Will I be able to download my genome on my iPhone and show it to my genome-savvy doctor? How about the privacy and the ownership of the medical data that will be stored in clouds and shared? Connecting the dots is the job that gets done in this book. "it doesn't take a village, it takes a galaxy". A galaxy of startups.

In this book, you get to meet the ecosystem that will do just that: connecting the dots. Theranos, Illumina, 23andMe, Edico Genome, Philips Healthcare, Salesforce, IBM Watson. The transition won't be seamless, neither will it be effortlessly easy. Also, I found answers to my queries: will doctors become obsolete? No. Will computer coding become central in medicine? Yes. Is there a good model of ownership of genomic data? Yes. Will patients worldwide have to do an amazing job of data sharing to cure and prevent diseases like cancer? Yes. "The most far-reaching opportunity that lies ahead for governments around the world is the support and promotion of massive online open medicine (MOOM) -- the planetary database of everyone's de-identified GIS that enables matching the best-known treatment and outcomes for all human beings.»

My GIS is the google Maps of my own health. Genome, metabolome, microbiome (which can be defined as the proxy of our diseases). Medicine will be quantitative. Traditional medicine (knowledge of the organs) is not quantitative. We have few vital organs, and an awful lot of base pairs in our genome. Never thought of it this way? See, like 99% of the people, you don’t have an inkling of how fast this revolution is coming. Will the patient (as opposed to the app, the software, the doctor, the drugs, the patents, the norms, protocols, procedures and guidelines and billing) be put at the center of the healthcare system? 

I value this book because, as a citizen, I want to become "a worthy partner in the co-production of medical intelligence." (Kim Goodsell, as quoted in this book.)


I was given a free copy of this book.







Genomic Entertainment

Writing my first sci-sitcom with co-writer Isabelle Provost... 



Nature

When DNA Means "Do Not Ask"

http://www.scientificamerican.com/article/what-rare-disorder-is-hiding-in-your-dna
In France, citizens do not have the right to request their own genome sequencing (bioethics laws). Failing to abide by the law means that you can be fined & jailed...

Mieux que donner ses organes : donner ses données !

Et vous, vous préférez quoi ? Mieux qu'être donneur d'organes : donner ses données médicales pour faire avancer la médecine personnalisée, celle qui guérira le cancer dans deux décennies ...
tinyurl.com/mpcz6ro

May 68 in Medicine




We don't think genomic precision medicine should be #BigPharma turning drug market into highly profitable niche #PWSYN

http://youtu.be/mVkPgOg7hAw
EdX MITx MOOC course 7.QBWx Quantitative Biology Workshop July 2014


Meme in Medicine