Comments on NYT article by Kai-Fu Lee on importance of personal data for AI progress--RE AI & HEALTH DATA

["Dave Farber" <farber () gmail com>]

From: Dave Farber <farber () gmail com> 
Sent: Monday, September 24, 2018 8:33 PM
To: Dr. Deborah Peel <dpeelmd () patientprivacyrights org>
Subject: Re: [epic_advisors] NYT article by Kai-Fu Lee on importance of personal data for AI progress--RE AI & HEALTH 
DATA

Can I pass on to my IP list?

> On Sep 25, 2018, at 7:30, Dr. Deborah Peel <dpeelmd () patientprivacyrights org> wrote:
>
>
>
> Please press for the powerful argument that "all data must be CONTROLLED by you", it's the key fundamental, universal 
> human right and the basis of every Democracy.  
>
> ---It's based on Warren & Brandeis' law review article on the Right to 
> Privacy (only 12 pages of clear language), the internationally 
> accepted basis for the modern concept of privacy: 
> https://groups.csail.mit.edu/mac/classes/6.805/articles/privacy/Privac
> y_brand_warr2.html
>
> The right to privacy = the right of individuals to control personal information, to autonomy, self-determination, and 
> respect. This is the basis of trust, whether between two people, or between a person and a business or government.
>
> ---All sorts of records w/sensitive personal information are owned/created/held by others, corporations, schools, and 
> government. They must function as fiduciaries or agents and uphold the human right to privacy. The GDPR goes a long 
> way toward protecting this right.
>
> RE: US HEALTHCARE
> Personal health information -- both inside and OUTSIDE ---the healthcare system, is a prime example. Individuals must 
> control personal health data (w/ rare exceptions such as when physicians violate privacy to save a life, report child 
> abuse, or commit those in imminent danger to self or others).
>
> RE: CHINA
> Intimate social and tech control of its citizens via total 
> surveillance will also create bad/distorted data for AI, because most 
> of the population probably hides, omits, or creates false or erroneous 
> data----just like the effect of unwanted surveillance of all US health 
> data, patients act to protect the privacy of sensitive information 
> that can be used to harm them (see link below on consumer survey)
>
> RE: HIPAA
> Individuals/patients had the right of consent/control over personal 
> health records, until the HIPAA Privacy Rule was amended (took effect 
> in 2003):  "The consent provisions...are replaced with a new 
> provision....that provides regulatory permission for covered entities 
> to use and disclose protected health information for treatment, 
> payment, or healthcare operations".  (67 Fed. Reg. 53, 183)
>
> This means US data holders now control the use of our health data (this sentence legalized the hidden US health data 
> aggregation industry, epitomized by IQVIA).
>
> 1)  Control over personal data about our minds and bodies MUST be 
> restored because the US public no longer trusts providers: in 2016, 
> 89% of 12,090 patients withheld information from their providers to 
> protect their privacy: 
> https://blackbookmarketresearch.newswire.com/news/healthcares-digital-
> divide-widens-black-book-consumer-survey-18432252
>
> 2)  This high level of mistrust means all US electronic health records systems (and the 2M+ hidden health data 
> aggregators that sell health data) no longer hold reliable or accurate data; it's filled with omissions and errors. 
> In turn, this causes errors in treatment and diagnoses, harming patients via unneeded testing, prescription of 
> unneeded drugs or treatment, and higher costs.
>
> ---Aggregating more and more flawed health data for AI to attempt to assure the accuracy of individuals' health 
> records will only exacerbate mistrust of providers and of discriminatory, inaccurate AI---creating a vicious cycle.  
> Major US corporations such as IBM, Optum, IQVIA etc that purchase massive health data bases (or buy companies to 
> acquire their massive health data bases) for proprietary AI, are big contributors to this vicious cycle. 
>
> ---By now it's possible close to 100% of patients lie and omit key data. Since knowledge of the lack of privacy 
> online is growing rapidly (helped by immensely by Facebook/Cambridge Analytica), almost 100% could be withholding 
> data about their minds and bodies.  FYI--the entire US healthcare system is also based on that model, surveillance 
> capitalism.
>
> 3)  The recent ProPublica/NYTimes article on Memorial Sloan Kettering setting up a private corporation called 
> Paige.AI to own and analyze 25M pathology slides to better diagnose cancer, without patient consent, because they 
> feared "30-40% would not give consent". Virtually all  US health research institutions use IRBs to avoid contacting 
> patients directly to ask for consent, even though it's trivially cheap & easy to contact almost anyone via cell phone 
> or email.
>
> Until we control all health data about our minds and bodies (inside 
> and outside the health system), no matter who or what owns your data, 
> mistrust in the US Healthcare system and US providers will assure bad 
> data for US health AI projects,
>
> Very Best,
> Deb
>
> Deborah C. Peel, MD
> Founder and President
>
> Patient Privacy Rights
> C:  (512) 820-6415
> www.patientprivacyrights.org 
> https://patientprivacyrights.org/health-privacy-summit/   
>
>
> PROTECT YOUR FUTURE - PROTECT PRIVACY
> HELP fight for the universal human right to control personal health 
> data
> DONATE: https://patientprivacyrights.org/donate-3/


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