We’ve got vaccines. Getting vaccinated is another matter.

It is amazing how one aspect of our response to COVID-19 appears fueled by light-speed technology, while another seems to be powered by a spinning hamster wheel. It’s curious that we can do great things in the lab to save lives, but we can’t effectively or efficiently coordinate the delivery of information, care, or medicines to consumers.

It’s part of a pattern that shows not enough thought has been given to the most basic coordination of information. After almost 11 months of dealing with the virus, we are still scrambling. At the outset of the pandemic, it was a mad dash to secure personal protective equipment for our frontline healthcare providers, essential workers, and households. Then we saw a run on toilet paper and other supermarket supplies, with the images of empty store shelves a stark reminder of how demand could quickly outstrip the capacity of our supply chains. Now, we are confounded by the frustration of scheduling COVID-19 vaccine appointments or having them canceled when there isn’t enough vaccine to administer.

Bottom line: our health information and delivery systems are not structured to prioritize consumers. Trying to secure a vaccine appointment is like swimming upstream, a tension-generating reminder of the fact that the health system isn’t set up to cater to patients.

Health system communications aren’t even modern. “It’s no secret that many providers and payers relied heavily on the use of fax machines and printed documentation,” said Paul Joiner, chief operating officer of health information network Availity, in a recent interview with Healthcare IT News. As the pandemic “disrupted operations for payers and providers, with many employees and staff members working from home, the willingness to collaborate advanced significantly,” Joiner added. “The old way of sending transactions, clinical documentation, and policy changes transformed overnight.”

And yet, many doctors continue to defend the use of the fax machine, citing HIPAA regulations and concerns of malware or ransomware. This continues to act as a stumbling block in an ailing system, where information needs to be put to active use directing and supporting action as part of an interventional medical care movement that people with health risks desperately need. People are at risk of dying, yet fax machines putt-putt along, alive and well.

What keeps consumers and patients from life-extending essentials is a failure of coordinating and communicating information; in a sense, weaponizing it against disease. Effectively sharing information helped power the innovation that resulted in novel vaccines. However, failing to coordinate how information is inputted, accessed, and applied fuels the anxiety we’re all feeling right now as people who should be protected from Covid-19 — those with life-threatening medical conditions, schoolteachers, people 65 and older, and others — struggle to get vaccinated.

Driving innovation is not the underlying problem; it is organizing information.

Most product shortages are created by poor planning colliding with public need, or worse, people panicking. Forget about moving pills, ampules, or devices on massive pallets from around the world to patients’ hospital bedsides. We have to reimagine how we move people’s medical information off paper charts and onto cloud-based systems so that health professionals — from providers to epidemiologists — can better serve patients with the needed level of coordination and urgency.

Now, as we rebuild our economic system, we have the opportunity to revisit how we coordinate the organization and delivery of healthcare that comprises 18 percent of the United States gross domestic product (GDP).

If we rally our information, tech muscle, and energies toward this one public health challenge alone, it will translate into billions in savings from reduced hospital costs, physician visits, and insurance bills, lifting the burden on taxpayers — both employers and families. It will also save people’s lives.

Remove the Information Sword of Damocles From Patient Care

To incentivize overhauling our health information systems, we need to make medical information available to consumers. That means upping the ante on cybersecurity to protect consumers and advance their health needs. It does not mean using data against them by denying consumers long-term care and coverage.

Many people shy away from confronting health challenges or sharing their personal data for fear their medical records will be held over them like the sword of Damocles. Is penalizing people for being unhealthy at one stage in their life journey worth punishing them in the future? Isn’t helping them to get healthy the ultimate win-win-win, reducing costs and waste and keeping them alive longer?

Information cannot be a vehicle for medical exclusion but should be a means to create healthier people and provide them with better, well-coordinated care.

Let us look at COVID-19 as a wake-up call. At some point, employers and insurers will find that encouraging self-care and disease intervention is a savvy, responsible business model. Digital health tools are readily available to support this. Telemedicine, health apps, remote monitoring tools, and other AI-based technologies contribute to healthier people who can access targeted medicines and individualized dosing.

It may be anathema to the holders of the system’s information keys to place consumers in the driver’s seat of wellness and self-care by giving them access to their own information. That’s got to change. “You cannot deliver on the promise of digital transformation with traditional IT,” reminds Edward W. Marx, chief digital officer, Tech Mahindra Health & Life Sciences, who also served as the chief information officer at Cleveland Clinic.

While we remember our supermarket runs for toilet paper, continue to stockpile masks and gloves, and struggle to set up our appointments for vaccination, we need to look beyond these snafus at what drives the system — information. COVID-19 reinforces that information technology is the foundation for countless public health solutions. It’s time we acted on that realization.

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HUH?

The famed CDC, the world’s premier public health agency — for which I had the greatest respect in the past — is now recommending that those who have been exposed to SARS-CoV-2 but are asymptomatic not get tested? I could not believe my eyes.

Well, it turns out, that the CDC’s scientists may not have been the authors of those new recommendations, according to the NY Times:

A heavily criticized recommendation from the Centers for Disease Control and Prevention last month about who should be tested for the coronavirus was not written by C.D.C. scientists and was posted to the agency’s website despite their serious objections, according to several people familiar with the matter as well as internal documents obtained by The New York Times.

The article continued:

“That was a doc that came from the top down, from the H.H.S. and the task force,” said a federal official with knowledge of the matter, referring to the White House task force on the coronavirus. “That policy does not reflect what many people at the C.D.C. feel should be the policy.”

This is alarming.

I’m not being alarmist about this. The guidance published on the CDC’s website is what doctors — like me — and hospitals, healthcare systems, infection control departments, and other healthcare institutions rely upon to get the most up to date information on a variety of diseases, including Covid-19. Before this, whenever someone at the hospital told me, “CDC recommends it,” that was the end of the discussion. I took it on complete faith that the recommendations were sound.

That faith has been shaken by these new revelations. That someone other than career scientists at CDC can “drop” new documents onto the CDC’s website is unbelievable. I mean, I had my suspicions that some of what the CDC was publishing was coming from non-scientists from outside the agency. Now those suspicions have been confirmed.

Something must be done about this. More robust security protocols need to be developed by the CDC so that only scientists — and perhaps only the CDC’s Director — can sign off on and approve what the CDC publishes on its website. It used to be like that:

The Centers for Disease Control has also often been criticized during the pandemic, for being too slow and cautious in issuing recommendations for dealing with the coronavirus. That’s partly because every document is cleared by at least one individual on multiple relevant teams within the agency to ensure the information is consistent with the “current state of C.D.C. data, as well as other scientific literature,” according to a senior agency scientist who spoke on the condition of anonymity.

In all, each document may be cleared by 12 to 20 people within the agency. “As somebody who reads them regularly and as somebody who has written things with C.D.C., I can tell you that the clearance process is painful, but it’s useful,” said Carlos del Rio, an infectious disease expert at Emory University. “It’s very detail oriented and very careful and they, quite frankly, improve the documents.”

But now, with officials at HHS and others being able to “drop” documents and recommendations on the CDC’s website at will, the agency’s credibility — already incredibly damaged during this pandemic — will only suffer further. And this is no small thing. If people — especially those of us in healthcare — no longer trust the CDC, then people’s lives will be at stake, especially when the next pandemic strikes.

Something needs to be done at the CDC, and perhaps that is why this article in the NY Times was published: scientists who care about the agency and its reputation are sounding the alarm through the press. I pray that the problems at CDC are fixed, and that — at all times — science and truth always win out. People’s very lives are at stake.

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