Dave Farber
2018-09-25 02:24:09 UTC
From: Dave Farber <***@gmail.com>
Sent: Monday, September 24, 2018 8:33 PM
To: Dr. Deborah Peel <***@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?
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Sent: Monday, September 24, 2018 8:33 PM
To: Dr. Deborah Peel <***@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?
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
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
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/
----------------------------------------------It's based on Warren & Brandeis' law review article on the Right to
Privacy (only 12 pages of clear language), the internationally
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
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/
Archives: https://www.listbox.com/member/archive/247/=now
Modify Your Subscription: https://www.listbox.com/member/?member_id=26461375
Unsubscribe Now: https://www.listbox.com/unsubscribe/?member_id=26461375&id_secret=26461375-c2b8a462&post_id=20180924222419:19A70728-C06A-11E8-8290-E2A0BFD43D41
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