Calling Dr. Zuckerberg, Dr. Zuckerberg! OR FaceBook health data mining

Life, liberty and the pursuit of happiness. At least so its says in some document under glass in the Smithsonian. First item on the list = life. A good life is synonymous with good health. This essay is not about Medicare for All/Single Payer (MFA/SP) but deals with today's nightmare, surveillance state scenarios.

First we have the mollifying "explanations" for certain actions, and then analysis of what all this really means.

First we start with a little background. HIPAA = Health Insurance Portability and Accountability Act. Probably one of the best things Bubba ever did was to not veto this act.

The Health Insurance Portability and Accountability Act of 1996 (HIPAA; Pub.L. 104–191, 110 Stat. 1936, enacted August 21, 1996) was enacted by the United States Congress and signed by President Bill Clinton in 1996. It has been known as the Kennedy–Kassebaum Act or Kassebaum–Kennedy Act after two of its leading sponsors.[1][2] The Act consists of five Titles. Title I of HIPAA protects health insurance coverage for workers and their families when they change or lose their jobs.[3] Title II of HIPAA, known as the Administrative Simplification (AS) provisions, requires the establishment of national standards for electronic health care transactions and national identifiers for providers, health insurance plans, and employers.[4] Title III sets guidelines for pre-tax medical spending accounts, Title IV sets guidelines for group health plans, and Title V governs company-owned life insurance policies.

Title 1 is the most important for both physicians and patients:

1 Titles
1.1 Title I: Health Care Access, Portability, and Renewability
1.2 Title II: Preventing Health Care Fraud and Abuse; Administrative Simplification; Medical Liability Reform
1.2.1 Privacy Rule
1.2.1.1 2013 Final Omnibus Rule Update
1.2.1.1.1 HITECH Act: Privacy Requirements
1.2.1.2 Right to access your PHI
1.2.1.3 Disclosure to relatives
1.2.2 Transactions and Code Sets Rule
1.2.2.1 Brief 5010 Transactions and Code Sets Rules Update Summary
1.2.3 Security Rule
1.2.4 Unique Identifiers Rule (National Provider Identifier)
1.2.5 Enforcement Rule
1.3 Title III: Tax-related health provisions governing medical savings accounts
1.4 Title IV: Application and enforcement of group health insurance requirements
1.5 Title V: Revenue offset governing tax deductions for employers

From personal experience as a practicing physician, HIPAA scared the bejeezus out of many physicians fearing federal penalties, possibly including imprisonment. Now most physicians on the front lines = actual patient care are not attorneys, nor do they have time to research all the minutiae of regulatory prose. Thus, I, like others, tip-toed quietly when confronted with patient information transfer. I plead guilty for falling for all the below-cited myths.

11 myths about HIPAA and medical records

Listed are the 11 myths, some of which may seem abstruse and remote from your health--but not when you're in fear of imprisonment and financial penalties against the care givers, not just physicians.

1. Myth: HIPAA Prevents Sharing of Information With Family Members

2. Myth: Only Patients or Caregivers May Get Copies of Health Records

3. Myth: Employers Are Payers, and Can Gain Access to an Employee's Records

4. Myth: HIPAA Laws Prevent Doctors From Exchanging Email With Their Patients

5. Myth: Providers Are Required by Law to Provide All Medical Records to You

6. Myth: Patients Denied Access to Their Records May Sue to Get Copies

7. Myth: HIPAA Laws Cover Privacy and Security for All Medical Records

8. Myth: Providers Are Required to Correct Any Errors Found in Patient Records

9. Myth: Your Health and Medical Records Cannot Affect Your Credit Records

10. Myth: Medical Information Cannot Be Legally Sold or Used for Marketing

11. Myth: HIPAA Can Be Used as an Excuse

Okay, what's important for patients and families?

Who gets copies of Health Records (HR)?

many other individuals and organizations that can access a patient's medical records without a patient's permission, some legally and some illegally.

Personal medical information can be obtained by anyone who helps you pay for your health care, from insurance to the government to your employer.
It can also be obtained by anyone who wants to buy it, although it may be aggregated and de-identified when it's purchased.
And sometimes it's either stolen or given away by mistake.

Notice that commercial use may disaggregate your information from any identifying personal identification. Sounds good, huh? Not so fast, there. But let's move on.

Can your medical information be sold or used for marketing?

these rules are also confusing to providers. That means these rights may get violated, whether that is intentional or unintentional.

An example of when information can be shared for marketing purposes is when a hospital uses its patient list to inform you of a new service it provides, a new doctor who has joined the staff, or a fundraising program.

An example of when information cannot be shared without an additional authorization from you is when an insurer who has obtained your information from one of your providers, then uses or sells your information to sell you additional insurance, or another product related to services you have already received.

You can see how these examples are confusing, and how the various entities that do have access to your records might take advantage of that confusion.

There are many other ways your medical information is sold and used for marketing purposes, too.

Repeat:

An example of when information cannot be shared without an additional authorization from you is when an insurer who has obtained your information from one of your providers, then uses or sells your information to sell you additional insurance, or another product related to services you have already received.

Reading between the lines: This information sharing preclusion applies to an insurer. FB is not an insurer.

Enter Dr. Zuckerberg.

Facebook tried to access and match medical data.

The [CNBC] network’s report says Facebook approached “several major U.S. hospitals to share anonymized data about their patients, such as illnesses and prescription info, for a proposed research project.”

Facebook apparently planned to use hashing to keep its users’ records and hospital data discrete, but intended to match profiles in order to suggest approaches to care.

Health care is mighty expensive to deliver, so data that makes it more effective is welcome. And if a timely intervention can save or prolong a life, that’s priceless.

But Facebook has repeatedly blundered when caring for data, with yesterday’s admission it allowed years of utterly-foreseeable profile scraping through automated phone number and email address lookups just the latest extraordinary SNAFU. The prospect of medical data in the company’s hands is therefore extremely worrying.

Some of the many faults in FB's data grab attempt go beyond mere marketing, even "personalized" marketing. One simple instance is to find out if you take a statin, then you will be advertised a different statin. But such intrusion might not be limited to statin substitution but to various alternatives to statins, some of which may be definitely disadvantageous to your health. Other such treatment program interventions abound.

The ultimate invasion of health privacy

Abilify combined with computer chip.

This article outlines a supposedly well-intentioned program to ensure medication compliance, currently with a new form of Abilify, one of the leading anti-psychotics and anti-mania drugs.

The article deals with strictly medical issues concerning such chip usage, which is beyond the scope of this essay. Abilify is quite potent, often without significant side-effects. This completely ignores the dark side of such a device. With ingested microchips, those who know your medications, know when and how much medication you're taking. Enter the Thought Police. Instead of sending John or Jane Doe to a "psychiatric" facility, the PTB can simply ensure that you are taking a large enough dose to be zombified, thus rendered less of a threat. In fact enough Abilify or similar antipsychotics can cause permanent debilitation, rendering a political activist incapable of simple life functions (Parkinsonian-like motor and mental side-effects being the most potent).

If this outrageous assault on personal freedom in the form of health data mining is not checked, we will find ourselves physically manipulated as well as brainwashed with approved propaganda.

This scheme is theoretically available from many so-called social media site with sufficient software support. Twitter in not your friend--nor is Google, Amazon--and definitely NOT FB.

So here Dr Zuckerberg is my message:

[video:https://www.youtube.com/watch?v=LZMmV6xXYFw]

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mimi's picture

I do understand your wording. Have to come back this evening to study it again. I am even amazed, because I had a visit here in Germany with a therapist and she rejected to get my email address and
refused to communicate that way with me. There seem to be a lot comparable legislation then here in Germany as well.

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@mimi 2 dosages in a 90 day period, claim denied, benefit cancelled. Hmmm...THC detected, send data to law enforcement, alcohol use shows binging beyond norms and has minor in household, notify child protective services. Hey , what could go wrong?

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@Snode meant as a general comment

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mimi's picture

@Snode @Alligator Ed
This is unbelievable, if true.

Abilify combined with computer chip.

Last week, the Food and Drug Administration (FDA) approved the use of a computer chip inside of aripiprazole (Abilify) pills. This computer chip is designed to indicate whether the person has taken his or her medication or not. The theory (and marketing push) is that this computer chip will improve treatment adherence (compliance). It will “ensure” people are taking their medications as prescribed. But will a computer chip inside of an antipsychotic really improve medication adherence?

The Computer Chip Inside of Aripiprazole (Abilify)
According to Prakash Masand, MD, the details on the computer chip inside aripiprazole can be described as:

. . . medication embedded with an ingestible sensor, [includes] a wearable sensor (being attached on left costal area on patient’s body), and software applications (mobile computing devices). After ingestion of the medication, the sensor embedded in medication is automatically activated in stomach and then a signal containing adherence-related information is transmitted to a secure cloud-based server via communication between the wearable sensor and the mobile application.

How can this be legal? Especially because it's so easy to manipulate a patient into compliance to accept to wear the device and accept to take the 'medication'.

Stunned. No words. This is an abusive 'treatment', imo. I guess I read again and then again.

I don't know if "I don't need a doctor", after having read through the myths stuff. It feels like I would need one, but then, I think the doctor might have gotten sick by what he is supposed to treat me with.

Wow. Thanks Alligator Ed. This opens new perspectives. Terrible ones.

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Alligator Ed's picture

@mimi Just the first of many more "health benefits" Big Brother (or Big Sister) has in line for us.

I-m so happy

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WaterLily's picture

The complete mania over mail-in DNA testing. I cannot get over the fact that so many people, including those in my own family, have fallen for this shit. The synapses aren't firing. It seemingly has never occurred to them that 1) Ancestry.com and 23andMe now own their genetic information, including what conditions they may develop in the future; 2) Those companies might (and probably will) sell it; and 3)If an insurer buys it, the information could be used against them.

Did you see any of the 23andMe commercials during the Olympics? They didn't even make sense! But I'm sure millions rushed right over to their devices to place an order.

We are so screwed.

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Alligator Ed's picture

@WaterLily When genetic ties to more diseases become better known to geneticists, and hence to PTB, then not only will you/me denied insurance because of "pre-existing conditions" but other nefarious outcomes will result. Such as subtle ways to poison or and sicken people based upon genetic predispositions. Polonium and cyanide won't be necessary to do us in, traceable. But other factors can be just as deadly in the proper circumstance.

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WaterLily's picture

@Alligator Ed Who refused to participate in this sham are still vulnerable thanks to our own relatives who gave their (and, hence, part of our) DNA away! Actually, it's worse: they paid for it.

My grandmother finds it fascinating that, according to her results, Ancestry has "matched" her with several other family members who also volunteered their genetic makeup. As she's 98 and I don't want to burst her bubble, I didn't point out the obvious and frightening implications of such knowledge being in corporate hands.

And sure, I'm not in the database, but it's pretty damn easy to figure out who's related to whom these days. "Oh, look: Susie So-and-So has the BRCA gene. Maybe we don't want to cover her three daughters that our risk analysts identified via Facebook."

I hate that I even think this could become a reality.

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snoopydawg's picture

@WaterLily

people are also putting spying devices in their homes. Amazon's Alexa and the Google devises that run people's homes can also be hacked by the spy companies without anyone knowing that they are doing it. Some people have reported that their devices will repeat their words even when they are off. Google can lock people out of their homes and businesses by taking control of the locks, turn off their electricity and numerous other things that they have hooked up to the devices.

Mimi asked how it's legal for people to be monitored to see if they are taking their meds as scheduled. The first part of the plan is for people to give their permission to be monitored and then after the kinks are smoothed out, the drug companies will be able to make it easier to do it to us without our knowledge. Nothing happens without it being well planned out in advance.

On a side note. I used to go to a pain clinic in SLC and my doctor thought I was mildly depressed so I had to see the psychiatrist and he after he only spoke with me for 10 minutes he decided that I should take Abilify. At the time it was being prescribed for people who were psychotic. I asked him if he was nuts because there was no reason to start me off on this. I told him no and then told my doctor I refuse to see him again. Pain clinics can make people jump through hoops and if you don't, you might be shown the door. Good luck finding another one after that. The drug companies have to damn much power over some doctors, IMO.

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Which AIPAC/MIC/pharma/bank bought politician are you going to vote for? Don’t be surprised when nothing changes.

Alligator Ed's picture

@snoopydawg In my experience, 98% of pain doctors couldn't diagnose a paper bag. There are some good ones who try understanding the origin of a person's problems. The rest want to
1. stick needles in you
2. electrify your spine (or brain)
3. give you the drug of the month.
4. tell you to get a shrink

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