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The Circle of Trust

Picture 24 Every day millions of Americans and billions of people around the globe are routinely accepting colorful pieces of paper in return for their labor and placing those hard earned possessions in modern glass buildings whose owners they do not know. It took a few hundred years to change how business transactions are conducted, but today, there is very little apprehension about depositing one’s wealth in a bank. Public trust in both the government issued paper and the financial institution’s ability to safely store the increasingly virtual representation of buying power had to be painstakingly created and watchfully maintained.

When people, for one reason or another, lose trust in government paper or banks, the entire financial system fails miserably. Public trust is a prerequisite to any national monetary system and public trust is a very delicate thing. Nations create laws and regulations around financial institutions specifically aimed at building public trust. 

People have to trust that paper and its virtual counterpart can be exchanged for goods and they need to trust that banks, while safely storing their funds, will always make them available to their rightful owner on demand. Banks have a legal and fiduciary responsibility to take good care of your possessions, thus very few folks feel the need to store their family jewels in a strong box under their floor boards.

The fast approaching era of Health Information Technology (HIT) raises the same dilemma faced by our forefathers trying to decide if they should take their gold coins to the bank, or stuff them in a secret compartment of their jacket, or maybe bury them under the cowshed. We need to decide if we want to make our Electronic Health Record (EHR) part of a Health Information Exchange (HIE), or carry them with us on a USB stick, or just leave them locked up in our doctor’s office. There are obvious benefits and risks to each approach. 

As long as banks were easily robbed on a daily basis, and as long as nobody guaranteed that your money was safe in a bank, and as long as you didn’t travel much, the cowshed was the best option. For the frequent traveler, the lovingly sown secret pocket was the optimal choice. When bank robberies disappeared from our daily experience and boats, railroads, automobiles and eventually airplanes transformed us all into a society of modern nomads, banks became the most practical choice, particularly since government insured our deposits were safe. Having a critical mass of citizens elect to store their wealth in banks allowed the economy to flourish. Millions of small personal fortunes aggregated together served as the engine by which banks fueled growth of businesses, which in turn created more and better paying jobs and ultimately added much value to those disparate small personal fortunes. Everybody benefited.

In 21st century America, most of us travel and change residence frequently. It would be nice to have our medical records be as portable as we are. Most of us use computers every day and couldn’t imagine life without the Internet. We also recognize the benefits of aggregating millions of data points to bring about more medical knowledge, better research and ultimately better health outcomes for everybody. So why is it that most people surveyed are as uncomfortable with EHR and HIE as Farmer John was with banks two hundred years ago?

In Health Care today we are at the “daily bank robbery” stage. It seems that every day another laptop loaded with clinical data is stolen, or a hospital computer system is breached. On top of that there is very little government assurance (HIPAA) that those holding our medical records should act responsibly and not use our personal records for “getting rich quickly” schemes while possibly inconveniencing, or even harming, us in the process. So before Farmer John can bring himself to deposit his medical records with an HIE, he needs evidence that not every fifteen year old with a gun (hacker) can easily avail himself of any records he chooses to have. Security of electronic medical information must be of Fort Knox quality. This is not currently the case when all sorts of unencrypted laptops and portable storage devices are floating around in employees’ cars and homes, and most hospitals and clinics have nothing in place even remotely resembling the security of financial systems.

When you deposit your valuables in a bank safety deposit box, banks are prohibited from peeking into your box, making lists of your possessions and sharing that information, unless required by law. When it comes to medical records, aggregators may hire a person familiar with statistics to attest that sufficient data elements were removed from personal records before a sale of information takes place, so only a “very small” risk of identifying the owner remains (HIPAA § 164.514), and there is no requirement for public disclosure of these shady transactions. EHR data sets are very rich with personal, not just medical, information and are worth many billions of dollars. Selling records to marketers, employers, “wellness companies”, insurers, pharmaceutical and device corporations should be explicitly prohibited by enforceable legislation. Aggregators of medical records should be allowed to modestly profit from supplying data to non-profit research institutions, and just like banks pay interest to those facilitating bank profits, medical records aggregators should share profits with Farmer John, either directly or by reimbursing providers for electronic data collection. And no, free software is not nearly enough compensation. Furthermore, any and all dealings and data exchanges should be fully transparent to the customer who chooses to deposit records with a particular aggregator. If Farmer John does not approve of an HIE’s policies and transactions, he should have the ability to take his medical records elsewhere. We need to know that our records are properly guarded and that we are the ultimate decision makers when it comes to their utilization. Public trust will follow. 

Trust is not built in a day and trust is not created in complete darkness and trust will not come about without concrete evidence that trust is possible. Asking people to trust their life records to an unnamed chain of software vendors operating with no legally enforceable regulations, while the headline news are chockfull of medical records robbery announcements, is very similar to Jesse James requesting Farmer John to deposit his life savings at the rickety bank he is about to rob. Talk is cheap and Americans are smarter than that.  Like Jesse James, I am from Missouri, so “Show Me” trustworthy conduct and I will trust.

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inchoate but earnestNateSMDMargalit Gur-Arieciphertext Recent comment authors
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Margalit Gur-Arie
Guest

I was not talking about minority kids, since I know you have a “soft” spot in that area. I was talking about all kids whose education you are paying for even if you don’t have kids, or they are all grown now. Of course Amex wants you to pay your bills, just like you want me to pay my premium. Amex is not hounding you though to consume less, or herding you forcefully into venues most profitable to Amex. I’ll take a wild guess here and say that would be very different if you received your credit card from your… Read more »

Nate
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Nate

I should warn you Margalit CNN and I are in cahots to discredit you. http://www.cnn.com/2010/TECH/innovation/08/09/smart.grid/index.html?hpt=C1 Experts on the nation’s electricity system point to a frighteningly steep increase in non-disaster-related outages affecting at least 50,000 consumers. During the past two decades, such blackouts have increased 124 percent — up from 41 blackouts between 1991 and 1995, to 92 between 2001 and 2005, according to research at the University of Minnesota. In the most recently analyzed data available, utilities reported 36 such outages in 2006 alone. “It’s hard to imagine how anyone could believe that — in the United States — we… Read more »

Nate
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Nate

“That’s how enlightened societies work.” So paying minority kids to get knocked up and have kids is enlightended now? Sustainable socities have parents that support their kids, not communities like one of your dear leaders believes. “You do have a negotiated price though. That’s one of the services we’re paying you for – group purchasing.” Which has nothing to do with cutting the check so I don’t see where you have a point? By your thinking my amex card which gets me all sorts of discounts should not require me to pay my bill monthly they should go after those… Read more »

Margalit Gur-Arie
Guest

“Sick people are spending someone else’s wages.” Yes they do. And children spend someone else’s tax contributions too. That’s how enlightened societies work. “I/insurance don’t have a contract for payment with the provider” You do have a negotiated price though. That’s one of the services we’re paying you for – group purchasing. “Like with electricity, water, phone, cable, trash, etc etc etc.” Works pretty good where I live and uniformly well elsewhere, which is more than I can say for health care. “So you oppose HCR and Obama’s demand to know if and from whom I purchase insurance, what type… Read more »

Nate
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Nate

“Whatever they spend on benefits is in lieu of wages.” Sick people are spending someone else’s wages. The need to control people spending other peoples money stands. ” Put pressure on those you pay out to, not those who pay you for services.” Legally and philosphically almost all benefits are paid out to the policy holder. Via assignment of benefits the policy holder ask the check instead be sent to the provider. I/insurance don’t have a contract for payment with the provider, our ocntract is with the member and thus they are really the only one we can pressure. “If… Read more »

Margalit Gur-Arie
Guest

incohate, I fully appreciate the value of aggregated medical records and that is why I would like to see proper regulations in place. People will not participate if they cannot be assured that the level of confidentiality they came to expect in a doctor’s office can be maintained while aggregating data. For good reason or just subjective embarrassment, people prefer to keep certain things to themselves and they should have the right to do so. Also, I don’t see what exactly gives software vendors ownership rights to the bytes and bits they are storing. It is possible that providers have… Read more »

Wendell Murray
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“an art gallery where your entire collection is now sitting on display while the bank CEO is collecting $50 entrance fees from any interested passer by” The analogy is accurate. Regarding Google’s intentions, who knows? Likely Google executives do not even know at this stage. Also it should be noted that Google is not the savior of the world in regard to software. The company has created wonderfully useful software, almost entirely by using FOSS software and of course by exploiting the many virtues of networking in ways that other commercial enterprises have not. Its business paradigm is almost the… Read more »

Margalit Gur-Arie
Guest

Nate, insurers don’t pay “the bill”. People pay the bill. Insurers only manage the pass-through process while extracting a nice profit from the entire thing. Employers don’t pay the bill either. Whatever they spend on benefits is in lieu of wages. All that said, I agree that in return for profit taken, insurers should make an effort to keep costs down on behalf of their customers. However, that should not be accomplished by terrorizing the customer. Put pressure on those you pay out to, not those who pay you for services. Part of the problem here is that consumers have… Read more »

Nate
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Nate

“while I certainly don’t want Nate to have any of my personally identifiable data ;-),” Its to late for that…so about that test you had last march, how did you get that exactly????? Some nice comments about me and the WWW will never know…. ” it could be inferred, and it currently is, from the ICD9s on the claim.” How do you audit the providers coding? Medicare’s biggest problem now is they trust providers to bill honestly and it has failed terribly. “This is a responsibility to be shared between doctors and patients only.” Like above this has been tried… Read more »

ciphertext
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ciphertext

Margalit, From Google’s Privacy Policy Page: sourceI’ve extracted the most interesting points (to me anyway). Information sharing Google only shares personal information with other companies or individuals outside of Google in the following limited circumstances: We have your consent. We require opt-in consent for the sharing of any sensitive personal information. We provide such information to our subsidiaries, affiliated companies or other trusted businesses or persons for the purpose of processing personal information on our behalf. We require that these parties agree to process such information based on our instructions and in compliance with this Privacy Policy and any other… Read more »

Margalit Gur-Arie
Guest

ciphertext, Just curious, what do you think the Google Health business model is? Providers don’t “own” the data in the sense that they own a car or a building. They have to maintain copies of the data for legal purposes, but the actual content, the patient story, is only held in trust by the doctor subject to an ethical and legal obligation to maintain confidentiality. This is not ownership in the sense that the doctor is free to conduct transactions with said data. The problem with EHRs is that now there is a third party involved, the vendor, who is… Read more »

inchoate but earnest
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inchoate but earnest

Margalit, while I certainly don’t want Nate to have any of my personally identifiable data ;-), I do agree with him that you may have fallen into the same misguided thinking about the risks – when stacked against the benefits – of more “interconnectable” health data that marks logic of the mostly unreasoning tribes he alludes to. Health records are quite like telephones, in that individual units have almost no value; they gain value with each unit added to the network. Self-funding employers already quake at the possibility of being found using an individual’s data to make decisions adverse to… Read more »

Margalit Gur-Arie
Guest

Nate, most of your examples can be accommodated by pre-aggregated data (number of referral to a particular specialist, percent of imaging tests ordered for a particular Dx, etc.). As to severity, I have my reservations regarding this particular CMS concept, but it could be inferred, and it currently is, from the ICD9s on the claim. Complexity of decision making, which is another factor for increasing the CPT level, will not become apparent without a chart audit anyway. If insurers are barred from exclusion of pre-existing conditions and from disclosure of information and from selling of information, I don’t see a… Read more »

Nate
Guest
Nate

“Why should the doctor have ownership rights to that data?” They are liable for the decisions they made that were based in large part on that data. How does a doctor defend himnself in regards to ordering or not ordering a test if we is not allowed to retain the information he used to make that decision? There are also numerous Federal and State regualtions that require they keep such data I beleive. The largest offender of selling personal information is the government, state and federal sell far more personal info then anyone else. “They will not share it nor… Read more »

Nate
Guest
Nate

Other marketing organizations should not be even able to contemplate legally obtaining such data. I wont disagree that marketing firms should not be able to access any of this data then bombbard us with solicitations. But take the baby out before you throw away the bath water. I can think of dozens of other firms that aren’t marketing that benefit from this data in legit ways that in no way harm the patient. Fraud, with 5-10% of the market it is hard to spot trends. If someone mines data on 80% of the market they can notice doctor A refers… Read more »