Lambert here: What is missing from this and other stories is that the missing piece in data interchange between disparate health care systems is a standard (and easily expansible) data schema, provided for the first time by the move to HHS. Necessary, but insufficient!
By Harris Meyer, was a senior reporte and managing editor at Modern Healthcare. Originally published at Kaiser Health News.
After terrorists slammed a plane into the Pentagon on 9/11, ambulances rushed scores of the injured to community hospitals, but only three of the patients were taken to specialized trauma wards. The reason: The hospitals and ambulances had no real-time information-sharing system.
Nineteen years later, there is still no national data network that enables the health system to respond effectively to disasters and disease outbreaks. Many doctors and nurses must fill out paper forms on COVID-19 cases and available beds and fax them to public health agencies, causing critical delays in care and hampering the effort to track and block the spread of the coronavirus.
“We need to be thinking long and hard about making improvements in the data-reporting system so the response to the next epidemic is a little less painful,” said Dr. Dan Hanfling, a vice president at In-Q-Tel, a nonprofit that helps the federal government solve technology problems in health care and other areas. “And there will be another one.”
There are signs the COVID-19 pandemic has created momentum to modernize the nation’s creaky, fragmented public health data system, in which nearly 3,000 local, state and federal health departments set their own reporting rules and vary greatly in their ability to send and receive data electronically.
Sutter Health and UC Davis Health, along with nearly 30 other provider organizations around the country, recently launched a collaborative effort to speed and improve the sharing of clinical data on individual COVID cases with public health departments.
But even that platform, which contains information about patients’ diagnoses and response to treatments, doesn’t yet include data on the availability of hospital beds, intensive care units or supplies needed for a seamless pandemic response.
The federal government spent nearly $40 billion over the past decade to equip hospitals and physicians’ offices with electronic health record systems for improving treatment of individual patients. But no comparable effort has emerged to build an effective system for quickly moving information on infectious disease from providers to public health agencies.
In March, Congress approved $500 million over 10 years to modernize the public health data infrastructure. But the amount falls far short of what’s needed to update data systems and train staff at local and state health departments, said Brian Dixon, director of public health informatics at the Regenstrief Institute in Indianapolis.
The congressional allocation is half the annual amount proposed under last year’s bipartisan Saving Lives Through Better Data Act, which did not pass, and much less than the $4.5 billion Public Health Infrastructure Fund proposed last year by public health leaders.
“The data are moving slower than the disease,” said Janet Hamilton, executive director of the Council of State and Territorial Epidemiologists. “We need a way to get that information electronically and seamlessly to public health agencies so we can do investigations, quarantine people and identify hot spots and risk groups in real time, not two weeks later.”
The impact of these data failures is felt around the country. The director of the California Department of Public Health, Dr. Sonia Angell, was forced out Aug. 9 after a malfunction in the state’s data system left out up to 300,000 COVID-19 test results, undercutting the accuracy of its case count.
Other advanced countries have done a better job of rapidly and accurately tracking COVID-19 cases and medical resources while doing contact tracing and quarantining those who test positive. In France, physicians’ offices report patient symptoms to a central agency every day. That’s an advantage of having a national health care system.
“If someone in France sneezes, they learn about it in Paris,” said Dr. Chris Lehmann, clinical informatics director at UT Southwestern Medical Center in Dallas.
Coronavirus cases reported to U.S. public health departments are often missing patients’ addresses and phone numbers, which are needed to trace their contacts, Hamilton said. Lab test results often lack information on patients’ races or ethnicities, which could help authorities understand demographic disparities in transmission and response to the virus.
Last month, the Trump administration abruptly ordered hospitals to report all COVID-19 data to a private vendor hired by the Department of Health and Human Services rather than to the long-established reporting system run by the Centers for Disease Control and Prevention. The administration said the switch would help the White House coronavirus task force better allocate scarce supplies.
The shift disrupted, at least temporarily, the flow of critical information needed to track COVID-19 outbreaks and allocate resources, public health officials said. They worried the move looked political in nature and could dampen public confidence in the accuracy of the data.
An HHS spokesperson said the transition had improved and sped up hospital reporting. Experts had various opinions on the matter but agreed that the new system doesn’t fix problems with the old CDC system that contributed to this country’s slow and ineffective response to COVID-19.
“While I think it’s an exceptionally bad idea to take the CDC out of it, the bottom line is the way CDC presented the data wasn’t all that useful,” said Dr. George Rutherford, a professor of epidemiology at the University of California-San Francisco.
The new HHS system lacks data from nursing homes, which is needed to ensure safe care for COVID patients after discharge from the hospital, said Dr. Lissy Hu, CEO of CarePort Health, which coordinates care between hospitals and post-acute facilities.
Some observers hope the pandemic will persuade the health care industry to push faster toward its goal of smoother data exchange through computer systems that can easily talk to one another — an objective that has met with only partial success after more than a decade of effort.
The case reporting system launched by Sutter Health and its partners sends clinical information from each coronavirus patient’s electronic health record to public health agencies in all 50 states. The Digital Bridge platform also allows the agencies for the first time to send helpful treatment information back to doctors and nurses. About 20 other health systems are preparing to join the 30 partners in the system, and major digital health record vendors like Epic and Allscripts have added the reporting capacity to their software.
Sutter hopes to get state and county officials to let the health system stop sending data manually, which would save its clinicians time they need for treating patients, said Dr. Steven Lane, Sutter’s clinical informatics director for interoperability.
The platform could be key in implementing COVID-19 vaccination around the country, said Dr. Andrew Wiesenthal, a managing director at Deloitte Consulting who spearheaded the development of Digital Bridge.
“You’d want a registry of everyone immunized, you’d want to hear if that person developed COVID anyway, then you’d want to know about subsequent symptoms,” he said. “You can only do that well if you have an effective data system for surveillance and reporting.”
The key is to get all the health care players — providers, insurers, EHR vendors and public health agencies — to collaborate and share data, rather than hoarding it for their own financial or organizational benefit, Wiesenthal said.
“One would hope we will use this crisis as an opportunity to fix a long-standing problem,” said John Auerbach, CEO of Trust for America’s Health. “But I worry this will follow the historical pattern of throwing a lot of money at a problem during a crisis, then cutting back after. There’s a tendency to think short term.”
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This is very unlikely without M4A. The current regulatory pathway is vague in requirements, resulting in standards that are not exact enough for actual “interoperability,” the industry term for the data sharing requested here.
For now, we’re waiting on primarily software developers and consultants to make this happen, which if you’ve ever worked with either, you’ll know the chances of success on the short term.
In the meantime, technical capacity does exist in the new FHIR standard for sharing even bed availability, if the us could just make sufficient regs. and the hospitals could agree to a basic set of data constraints.
I left a small consulting group working on this after almost 4 years last December after the mismanagement and general industry inability to advance these goals did me in. BTW, I looked for almost 2 years for the exit. What a great economy it was.
Leaving this in the hands of private, for-profit corporations that get away with claiming the free speech and privacy rights, and all other constitutional rights, of people, is purely insane.
Just like everything else about our health care non-system.
Right. When I read the headline, I thought, “what public health care system?”
No kidding.
Wrong Nation-state, wrong era.
There might be a lot if resistance to setting up a nation-wide reporting system throughout America by Americans for a very good reason. A lack of trust. It came out that there were major problems with contact tracing in that with the deluge of telemarketers, that people were normally refusing to pick up on strange telephone numbers, hence the failure of a lot of attempts to contact trace. So a personal convenience like the telephone has been broken due to corporate greed.
Same here. How many people would be happy to put all their medical information on a national database if they got Coronavirus. That information would not stay there but you just know that it would be sold on and commercialized. With maybe 35% of infected people suffering after effects, a lot of employers would want to know who they could drop from their hiring lists. Drug companies would want to know who to target with their ads going by their exact medical profile. I am sure that there are other possibilities so a lack of trust will have actual effects here.
> “We need… improvements in the data-reporting system so the response to the next epidemic is a little less painful,” said Dr. Dan Hanfling, a vice president at In-Q-Tel, a nonprofit that helps the federal government…
And Hanfling is from In-Q-Tel, where George Tenet is still on the board? The CIA established non-profit In-Q-Tel in 1999 under Tenet’s watch. The CIA LOVES data and somehow ALWAYS uses it wrong. In-Q-Tel private sector “partners” have now had 21 years to get data workable and right.
Here’s an 2016 Intercept article By Lee Fang on a data collection sponsered by In-Q-Tel:
THE CIA IS INVESTING IN FIRMS THAT MINE YOUR TWEETS.
With humans like this in leadership roles, who needs leadership? Just get me a working post office…
It seems that Americans are singularly uncooperative. The refusal to wear masks among the humblest citizens is mirrored in the refusal to standardize and exchange data among elite medical professionals. The myopic preservation of petty administrative kingdoms regularly takes precedence over rationalization of health care infrastructure that would save billions of dollars and thousands of lives.
The GOP wants to privatize the entirety of healthcare
no matter what.
Democrats actually do want to keep what we have
that has worked and improve our systems of government
services we expect from what we have of institutions.
Right now many of us do not have the means to
tolerate more privatization and the fractures that
come along with that.
Medicare and Medicaid are largely privatized already. Democrats actually do want to keep the campaign contributions they get from the insurance industry and big pharma. That has been their primary objective every step of the way.
Until we get serious and nationalize health insurance, at the very least, and put some brakes on drug price gouging as most other countries have managed to do, we are going nowhere, Scott1.
We continue complete corruption. Not many in government want to give up those big medical and big Pharma donations. Any Covid information can and will be used against you as a preexisting condition. I wouldn’t willingly give this corporate government any medical information. (Note all of the new drugs that need your DNA. Why would I think that information won’t be sold or used for nefarious purposes? Especially with the PATRIOT Act still rolling along.)
The attack on the public realm has been concerted, bipartisan, and many generations long. I’d suggest this has been primarily funded by the Kochs whose libertarian convictions echo Margaret Thatcher’s declaration that there’s no such thing as society, only individuals and families…. A statement roughly equivalent to saying you don’t have a body, only cells and organs.
To the political right, there is no such thing as a systemic problem. M4A says the opposite.
How does streamlining the system to register everyone and his dog help the individual patient recover?
I’m not seeing it.
One might believe the US Medical System exists to treat it’s Inhabitants.
My experience is that the US medical System exists to extract the maximum money from it’s marks.
The up-selling and pressure to get the patients to buy extras at every opportunity is large and extortionate.