Who Controls Your Private Health Information in a Growing Digital Identity Ecosystem?

Of all the U.S. states, Nebreska may hold the key, and it's eye opening (11 min read.)

Photo by National Cancer Institute on Unsplash

The road to hell is, definitely, paved with many good intentions.

Such “good intentions” might be driven by a compelling belief in “helping to save humanity from hell” through serving the “greater good.”

And it doesn’t matter if the individual is gradually stripped of their privacy, personal autonomy, and even fundamental human rights—because, after all, they are being “saved from hell.”

As such, the above proverb holds very true, particularly towards those who remain adamantly—no, arrogantly—committed to believing that their deeds will help to save humanity from suffering, sickness, and disease.

Thus, Nebraska lawmakers justified voting to create a Health Information Technology (HIT) Board in 2020 to collect health information about Nebraskans, and help doctors enhance patient care.

Ah, that infamous year—2020.

“Empower healthier communities” through centralizing patient information

While many parts of the nation were bamboozled, paralyzed, and seemingly gripped in a media-frenzy trance over the reported outbreak of a novel coronavirus, the Nebraska Legislature voted unanimously in August to create the state’s patient data-collecting HIT Board.

According to the Nebraska HIT Board website, all 17 board members include doctors, a nurse practitioner, and other “healthcare providers, enabling them to use their clinical experience and expertise to make the most informed decisions about the health data that they help govern.”

Indeed, the state law that enabled the creation of the HIT Board assigns a regional health data utility called “CyncHealth,” which manages the medical records of over 5 million patients in more than 1,100 healthcare facilities across the Midwest, to centralize and preside over Nebraska’s registered patient information.

CyncHealth’s mission is to reportedly “empower healthier communities through … bringing data democratization, cultivating economic value, and delivering a health data utility.”

In other words, CyncHealth is driven to create an exhaustive computerized or “digital” record for every registered patient—such as immunization and medication history, and radiology and physical examination reports—that is easily accessible to their physicians, nurse practitioners and other health professionals.

Justification and concerns

A centralized health data utility is justified to improve efficiency and productivity in healthcare management and, ultimately, benefit the individual patient.

“Patient care is complicated enough without trying to do it in a vacuum,” CyncHealth states on its website. “When providers aren’t able to communicate, mistakes happen, costs rise, and patients suffer. That’s why we’re breaking down barriers to deliver the right information at the point of care—every time.”

The centralized data-collecting hub will reportedly support “CyncHealth participants,” be they a patient or healthcare professional, to “determine appropriate care management strategies, enable effective review to detect and mitigate fraud, waste and abuse, and more effectively direct funding to high-value care initiatives.”

A top-down system that manages millions of citizens’ private medical records might seem more efficient than a collection of smaller medical institutions, each managing its own uniquely stored records in a database. However, a top-down approach tends to consolidate power for a “few” and thus fuels the temptation of corruption at the expense of the “many.”

With a centralized medical records system, the public at large—or those working within such institutions—might be less intimidated and thus more easily convinced about the emergence of a dollar-based central bank digital currency (CBDC). The U.S. is currently in a research and pilot studies phase, and its mainstreaming could be used to justify addressing the “threats” of foreign CBDCs from nations viewed as adversaries to U.S. homeland security.

Since the start of the “pandemic” lockdown and assigned closure of “non-essential businesses” in 2020, the Nebraska legislature passed Legislative Bill 1183, which laid the groundwork for the HIT Board and established CyncHealth as a platform that connects health information exchange for healthcare organizations across the Midwest.

Next, in 2021, Legislative Bill 411 was passed and approved by the state’s governor, requiring that each health care facility “shall participate in the designated health information exchange through sharing of clinical information.” Thus far, most health facilities in Nebraska have acquiesced except for those that lacked the resources to enter CyncHealth, and received a waiver from this “required participation due to technological burden.”

CyncHealth openly share plans with the public

It is useful to note that CyncHealth allows individuals to opt out of the state’s health information exchange. After all, we live in a democratic republic that respects individual liberties and privacy, right? We aren’t being coerced to comply, right? And the American people have a right to know and access the HIT Board meetings on Zoom under the Nebraska Open Meetings Act.

Now, it may also be useful to learn that while CyncHealth is based in the city of Omaha in Nebraska, it is a member of the CARIN Alliance—an international nonprofit with members that are leading the market in healthcare and digital products such as Amazon, Apple, CVS Health, Google and Microsoft.

CARIN’s vision is to accelerate the sharing of digital health information between consumers and their authorized caregivers. They support the development of a digital identity document (ID) to reduce the administrative burden of manually obtaining identification multiple times for an appointment, and thus enable “optimal practitioner encounters.”

Such an initiative would be compatible with the goals of its coalition partners, the Vaccination Credential Initiative (VCI) and the Department of Health and Human Services, in helping to define the healthcare system toward a more “secure federated digital identity ecosystem.”

If Men were angels, there would be no need for a government to protect our Natural rights. And if Men were free from the temptation of greed and vicious control, then we wouldn’t be suspicious of ways the American people’s data might be used by state or federal government, large corporations, and non-governmental organizations steeped in public-private partnerships, willing to engage in data harvesting, deceptive or aggressive tactics and manipulation in marketing, and spreading disinformation.

Boosting an awareness about digital IDs

Indeed, according to a Bloomberg article from 2023, a growing number of states are allowing residents to prove their identity digitally, such as a mobile driver’s license provisioned to a smartphone. To this end, the Transportation Security Administration now accepts such digital forms of IDs from Arizona, California, Colorado, Georgia, Iowa, Maryland, and Utah at over two dozen airports nationwide.

Louisiana’s mobile ID app has been legally recognized as equivalent to a physical license or state ID card since 2020—there goes that year again! In addition to holding hunting and fishing licenses, the app can also store vaccination records. Meanwhile, other state governments such as Iowa have either reached out to businesses looking to accept digital credentials, or are planning to do so in the future.

Interestingly, the broadening acceptance and use of digital IDs correlate with the number of people accessing mobile devices such as smartphones, tablets, and laptops. For the enthusiasts, a solution to overcoming possible barriers might be integrating ID-reading technologies into point-of-sale systems used when shopping at brick-and-mortar or online stores and entertainment venues requiring age verification.

And while the United States is progressing to embrace the aforementioned “digital identity ecosystem,” the momentum is evident in the field of healthcare, not least within the VCI, which describes itself as “a voluntary coalition of public and private organizations committed to empowering individuals’ access to a trustworthy and verifiable copy of their vaccination records in digital or paper form using open, interoperable standards.”

Let’s just pause there, and repeat: “a voluntary coalition of public and private organizations.”

And again: a “coalition of public and private organizations.”

So there goes the concerning advancement of public-private partnerships, a business relationship that has arguably witnessed a rebirth over the past 30 years, given that California was the first U.S. state to issue a public-private partnership legislation in 1989, followed by Virginia in 1995.

To continue promoting systems that manage digital patient data, the VCI supports using “SMART Health Cards,” which are now issued in 27 U.S. states and territories and nine other countries, including Canada, Japan, and Australia.

According to its primary website, a SMART Health Card is a “verified version” of an individual’s clinical information, such as their vaccination history or test results. It is based on a project run out of the Boston Children’s Hospital Computational Health Informatics Program and features a QR code that can be read by any mobile device or computer with its corresponding software.

As such, this technology could easily integrate into the broader “digital identity ecosystem” initially through choice and later through mandates, should the masses comply or acquiesce. Unsurprisingly, digital IDs are being promoted as a convenience, which is a typical marketing strategy for convincing the public that some hardship, burden, or life pain will be eased or eliminated by opting into the publicized service.

Such technologies, in actuality, could be a brilliant tool in a decentralized system, where an individual has total and complete ownership of information they regard as private and can share or protect that information from others—including governments at any level.

But when integrated in a centralized system, in coordination with public-private partnerships —whether at a state or federal level—clinical and other private information could be easily, potentially, weaponized to monitor and control access to finance, work, higher education and travel.

In other words, imagine your personal information, such as online shopping transactions, social media posts, and preferred vehicle, channeled into a social credit score that determines the degree of liberties you are entitled as a good American citizen under a particular social and political philosophy.

The spread of digital IDs across the world

As the spread of computerized and online technologies is global, so will the concept and usage of digital IDs. For example, the Parliament of the European Union (E.U.) agreed in late 2023 on a new framework for an “E.U. Digital Identity Wallet,” which is effectively marketed as a “secure and easy way for European citizens, residents and businesses to prove who they are when accessing digital services.”

Furthermore, the United Kingdom (U.K.) government has revealed its very own “Digital Identity Wallet (self-sovereign and reusable)” currently in a pre-release testing mode. A key “social value” for using the app is justified as “fighting climate change” by reducing the need to travel to a physical location and present identity documents, thus lowering carbon emissions.

At this stage, it might be unsurprising to learn that other countries with comparable or more advanced digital infrastructures boast their very own digital IDs, including Canada, Australia, China, Japan, Singapore, Qatar and the United Arab Emirates.

U.S. Digital ID bill passes to Senate

Known as the “Improving Digital Identity Act,” this legislation was passed by the U.S. Senate Homeland Security and Governmental Affairs Committee in 2023 with a vote of 11-1, and moved to the full Senate in July of that year.

As of now, the bill is still lingering in Senate Purgatory, and attempts to justify the need for a digital ID as follows:

“The inadequacy of current digital identity solutions degrades security and privacy for all people in the United States, and next generation solutions are needed that improve security, privacy, equity, and accessibility.”

This bill, wait for it, calls to establish a “temporary task force” within the Executive Office of the President to recommend “secure methods and coordinate efforts for digital identity verification.”

Members of this supposedly “temporary task force” would include representatives from federal agencies, as well as “nongovernmental experts,” whose recommendations, if implemented, must be coordinated with the Cybersecurity and Infrastructure Security Agency (CISA).

The proposed legislation also builds upon calls from the bipartisan Commission on Enhancing National Cybersecurity for federal agencies to act as “authoritative source to validate identity attributes in the broader identity market.”

This follows various proposed bills relating to cyberspace activities, including the bipartisan Strengthening American Cybersecurity Act and Securing Open Source Software Act, which would legally compel the federal government to support efforts to strengthen the security of open-source software like ChatGPT or GPT4All.

The latter bill sets forth the duties of CISA to “perform outreach and engagement to bolster the security of open source software” and building upon public-private love affair, “coordinate with nonfederal entities on efforts to ensure long-term open source software security.”

Addressing identity theft and imposter scams

According to a February report from the Federal Trade Commission, American consumers lost a record $10 billion to fraud, including impostor scams, and filed over a million reports of identity theft last year.

To state the obvious, identity fraudsters are integrating themselves in the digital world in line with the overall increase in artificial intelligence technologies that facilitate stealing one’s identity, or even combining real and false information to create a fake or “synthetic identity.”

Such activities will provide a stunning reason for secure, government-issued Digital ID enthusiasts to advocate for the pressing need to build a robust and trustworthy “digital identity ecosystem,” to prevent identity fraud.

Yet, how about strictly limiting identity or personal information to localized digital systems, whether in the financial, medical, or education sector? Imagine your local bank or physician’s practice having a robust database that maintains sensitive customer or patient data within the boundaries of its business. In other words, it is not federal or centralized, and you can have full access to that information to manage it appropriately. It is not unusual for small, private schools to store student details in digital format using specialized software—and for that information to remain locked within the school.

Imagine a scenario in today’s digital age where the overriding cultural value system compels businesses and the government to refrain from centralized access to such personal information and rigorously promotes a local and decentralized approach to data security.

I don’t think the Founding Fathers would have objected. How about you?

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