Part 4: What a National Health Data Sharing System Could Actually Look Like

Disclaimer: This post reflects my personal opinions and conclusions, based on experience and a desire to see functional, secure improvements in the U.S. healthcare system. While rooted in real-world constraints and feasibility, this is not a technical white paper or legislative blueprint—it is a reasoned proposal informed by what could work, not what is. Everything here should be debated, tested, and reviewed with public input, expert guidance, and constitutional scrutiny.

Building a national, interoperable healthcare data system isn’t just possible—it’s necessary. If the U.S. ever hopes to catch up to the digital infrastructure seen in other developed countries, we need a plan that combines federal standards, state-level execution, strict privacy protections, and above all, a pragmatic approach to what’s politically and operationally possible.

This is one possible framework.

1. Federal Standards, State Execution

The federal government would lead by defining the core database structure and data standards, with each state responsible for deploying a centralized medical database that meets those specifications.

To jumpstart this effort, federal grants would be provided to all 50 states to either build or upgrade their health data infrastructure.

Federal Responsibilities:

• Defining the Universal Health Identifier (UHID) format and governance

• Establishing standardized upload file formats for syncing data

• Creating the security protocols, access policies, and audit frameworks

• Deciding what data is collected, who can access it (especially via APIs), and under what conditions

• Restricting direct API access to government entities—primarily HHS, not private corporations

• Scaling up the Department of Health and Human Services (HHS) to manage a national data repository of this size and sensitivity

Data Security:

• The national health data repository would need to be housed within the same security architecture used for the country’s most classified and sensitive data.

• This includes:

  • Compartmentalized access controls

  • End-to-end encryption

  • Multi-layer physical and digital protections

  • Constant auditing and monitoring for breaches or misuse

Health data may not be military intelligence—but the consequences of compromise (identity theft, blackmail, social engineering, targeted discrimination) are severe. Therefore, it deserves equal protection.

Controlled Public Access to Anonymized Data

To strike a balance between transparency, utility, and privacy, the federal government could provide access to anonymized, aggregated health data through a registered web portal. Access would be limited to verified institutions and researchers, and only data that qualifies as public health intelligence—not individual-level records—would be shared.

Examples of what could be made accessible:

• Medication heat maps, allowing pharmaceutical companies to view where their drugs are most commonly used (down to the county level)

• Top 10 conditions or diagnoses commonly treated by each medication (aggregated by region)

• Vaccine uptake rates and geographic trends

• Public health trends such as regional spikes in flu, diabetes, or hypertension

This type of access would empower pharmaceutical companies, researchers, and public health officials to:

• Improve drug targeting and education campaigns

• Identify underserved areas or unexpected health trends

• Justify funding requests or trials based on real-world population needs

Crucially, this portal would provide read-only, statistical insight—never individual patient records, and never identifiable data. All queries and report generation would be logged and monitored.

2. What Would a UHID Look Like?

While the Universal Health Identifier (UHID) is fundamentally a digital key, there will need to be a physical representation—something patients can carry and providers can use to validate and access data when needed.

A few considerations:

1. Biometrics: Useful, But Not Sufficient

Biometrics such as fingerprints, facial recognition, or iris scans may be helpful for identity verification, but they come with significant limitations:

• Aging and medical conditions can degrade fingerprint accuracy

• Injuries, burns, or congenital disabilities can prevent reliable biometric capture

• Infrastructure limitations in rural or under-resourced areas mean many providers may not have the biometric scanning equipment needed

• Even when available, hardware maintenance and calibration becomes an added operational burden

Because of these issues, biometrics should be considered optional and supplemental, not the primary method of identity verification or data access.

2. A Physical UHID Card

The most inclusive and scalable solution is a physical UHID card, issued by the federal government—similar in form to a Social Security card but modernized for healthcare use.

• Not tied to financial accounts, so loss is less damaging than a bank card

• Designed with anti-tamper features, such as encrypted QR or NFC elements

• Could optionally include a photo but wouldn’t function as a general ID

• Easily reissued through a secure process if lost or damaged

3. Secure Access via NFC + PIN

Data access could be handled securely using a Near Field Communication (NFC) chip embedded in the card:

• Tap the card on a clinic or pharmacy reader to initiate access

• The patient then enters a personal PIN to authorize sharing

• The provider is granted role-based access, meaning they only see what they’re permitted to access

This method combines security (PIN) with portability (card) and scalability (standard NFC readers already exist in many medical devices and smartphones).

3. State-Level Implementation & Responsibilities

At the state level, each Department of Health and Human Services (State HHS) would take charge of:

• Integrating existing health records into the new system

• Matching patients across records and assigning their UHID

• Eliminating duplicates and linking historical data for continuity

• Mandating provider participation across the healthcare spectrum

But the state role is more than just data warehousing.

Using this new infrastructure, state HHS teams would monitor public health trends regionally, identifying:

• Areas with significantly better or worse health outcomes

• Disparities between rural, urban, and suburban populations

• Local patterns in disease, medication adherence, and hospitalizations

From there, they’d be empowered to launch localized investigations to uncover environmental, economic, or systemic causes behind these disparities.

4. A Real-Time View of National Health

Once state systems are up and running, the federal government gains the ability to analyze national health in near real-time.

HHS could then:

• Compare overall state health performance

• Monitor illness spikes or emerging disease outbreaks

• Track prescription drug usage and vaccine outcomes

• Identify unexpected side effects from new medications

• Provide de-identified, aggregate reporting to pharmaceutical companies (but not raw data access)

This is how public health should work in the 21st century: fast, data-driven, and nationwide.

5. UHID Assignment at Birth: A Critical Step

The UHID must begin at the very beginning—birth.

Before a newborn receives medication or care, the state must ensure a UHID has been assigned. Ideally, this can be pre-generated as part of the birth registration process and verified securely at delivery.

Why it matters:

• Assigning a UHID at birth ensures lifelong medical continuity

• Prevents the creation of duplicate or fake medical identities

• Guarantees that health events are recorded from day one

But it must be secure.

A poorly implemented UHID system could open the door to fraudulent identities, especially if used outside of healthcare. That’s why UHIDs should never be tied to financial systems, credit, or general ID use. They must be strictly limited to healthcare and public health applications.

6. How the UHID Is Assigned and Integrated

The process of assigning and integrating the UHID requires precision, cooperation, and clearly defined roles at each level.

Federal Role: Assigning the UHID

• The federal government is solely responsible for generating and issuing each UHID.

• UHID creation would rely on commonly accepted documentation such as:

  • Birth certificates

  • Driver’s licenses

  • Passports or other government-issued IDs

Strict controls must be enforced to prevent duplicate or fraudulent identities from entering the system.

State Role: Matching Vaccine and Health Records

States would begin their data integration using existing vaccine registries, which are currently the most comprehensive health datasets available at the state level. Their role would be:

• Matching patients across vaccination records

• Assigning UHIDs to those records

• Populating the new state health database with validated back data

Provider Role: Record Matching and Triggered Sync

Electronic Medical Record (EMR) systems at clinics, hospitals, and pharmacies would:

• Collect the new UHID during patient intake or updates

• Match the UHID to existing patient profiles

• Trigger a data sync event to the state health repository once a match is verified

This would allow the system to backfill years of patient history, bringing immense value to both public health tracking and future care coordination.

Ethics, Enforcement, and the Future of Health Data in America

Here’s where things get uncomfortable - and personal. 

A Quick Opinion about Health Insurance Companies

In theory, a national health data system could allow insurance companies to charge people based on real-time health risk. If you have high blood pressure, obesity, or diabetes—you could be seen as a cost liability.

Some will argue that’s fair. But that’s ignoring the deeper reality:

• Access to healthy food, clean environments, and quality care isn’t equal

• People in lower-income neighborhoods often lack access to the resources that promote health

• Eating healthy costs more, both in time and money. That’s just a fact.

So the result is predictable: those already struggling could be forced to pay more, simply for being born into a tougher zip code.

That’s why I believe the entire healthcare system should not be for-profit. It’s not just about who pays what—it’s about what motivates the care being delivered.

In a non-profit healthcare model:

• Resources are allocated based on medical need, not revenue opportunity.

• Flat-rate pricing becomes feasible because the system isn’t built to generate dividends or investor returns.

• Hospitals and clinics can focus on preventative care and long-term outcomes rather than short-term billing cycles.

• Providers can be incentivized to reduce ER visits, manage chronic conditions, and support wellness—not maximize reimbursable procedures.

Most importantly, non-profit structures create accountability to communities, not shareholders. Their mission is care, not margin. This doesn’t eliminate inefficiency or guarantee perfect outcomes—but it shifts the foundational goal toward health equity and sustainability.

Supporters of for-profit healthcare often argue that these organizations operate with greater efficiency and lower per-patient costs. However, this efficiency warrants scrutiny. Are these savings achieved through the denial of more insurance claims? Do for-profit insurers and providers succeed because they are better negotiators with hospitals and pharmaceutical companies—or are they driving down costs at the expense of patient experience, staffing, or quality of care? Or is it because they are under pressure to deliver returns to shareholders, leading to cost-cutting measures that may affect care quality or accessibility? These questions deserve a transparent and comprehensive examination before concluding that profit-driven models inherently serve the public better.

As for pharma companies? If they want to stay for-profit, fine—but they must justify their pricing. We should cap prices based on:

• International cost comparisons

• R&D cost disclosures

• A reasonable profit margin, not predatory pricing

This section is opinion, but it’s grounded in the belief that access to health should not be shaped by profit motives. We can’t build a better system unless we acknowledge the one we’re in.

A Quick Opinion about UHID Mandates

A fully mandatory UHID system could introduce access issues for vulnerable populations. At the same time, a completely voluntary system may not provide the data consistency needed for public health insights.

The most pragmatic approach may be a middle ground:

• Strongly encourage UHID use for all patients, but do not deny care to those without one.

• Allow emergency providers to assign temporary IDs to ensure urgent care is not delayed.

• Offer incentives (such as faster service or reduced admin burden) to patients and providers who adopt the UHID system.

Yes, this will leave some data gaps, but they are unlikely to be significant enough to disrupt outcomes or analytics at scale. With proper infrastructure, those gaps can be mitigated without creating a system that excludes anyone from receiving care. Even so, any implementation must be rigorously examined through the lens of the U.S. Constitution—a document that should always guide what we can and cannot do. The constitutionality of any system involving identity and personal data must be debated, tested, and challenged from every angle to ensure it upholds the rights, privacy, and security of U.S. citizens. There will be a greater discussion about my thoughts on this topic in a future blog post. It deserves an in-depth analysis on how this system can be used.

A Quick Opinion about Unintended Consequences

There’s an uncomfortable truth: we might be afraid to know what the data shows.

If we start collecting real, comprehensive health data, it might expose:

• Poor performance from politicians or agencies

• Wasteful spending

• Stark health disparities across states, races, and income brackets

• Harmful outcomes or undisclosed side effects tied to pharmaceutical products

That last one may be the greatest hurdle of all.

The moment we begin cross-referencing large-scale health outcomes with medication usage, pharmaceutical companies could be exposed to legal liability—especially if it’s discovered that certain drugs caused long-term harm that was never fully understood (or disclosed).

This is precisely why we must prepare legislatively before this system launches.

• Congress should consider passing a one-time amnesty law for pharmaceutical companies, shielding them from lawsuits if and only if the adverse data was previously unknown.

• If there’s evidence that a company knew about serious side effects and failed to act, amnesty would not apply.

• For those individuals found to be affected by new insights gained from this health data system, a federally managed compensation fund could be created.

  • This fund would offer a lifetime cost-of-living stipend to qualifying individuals whose conditions can be medically tied to unforeseen medication outcomes discovered after the fact.

This solution won’t please everyone—but it’s a realistic compromise that balances innovation and accountability. It protects innovation and accountability while putting patient wellbeing at the center of the conversation.

The health of the American people must rise above politics and profit. This isn’t about ideology—it’s about function. It’s about fixing what’s broken.

And without usable, secure, and comprehensive health data, we’re operating blind.

We don’t need to be. We just need to stop pretending the system is fine as-is.