Tuesday, September 01, 2009

Shall We Repeat The British EMR Mistakes, Too?

In March, I wrote about GE's offer to help us get our share of the EMR/EHR stimulus pie. Obviously, there is a lot of money to be made, and a lot to be distributed. There were rewards for early adoption, and penalties for slackers.

As with the potential governmental health care system, this has been done elsewhere, in Britain to be exact, and it didn't work very well.

Greg Freiherr, writing as Scan Man in Diagnostic Imaging notes:

Ironically, as the Feds wiggle this cornerstone of a national HIT system into place, the one in Britain is crumbling. Seven years after U.K. prime minister Tony Blair announced that English doctors within a decade would be able to share records, conservative politicians there are talking about pulling the plug on what they see as a terminally ill system, one that has not met its goals and shows no sign of being able to do so.

And it isn't just Scan Man who is indicting the British program. From the San Francisco Examiner 3/2/09:

. . .(A)sk health care providers in Britain’s National Health Service, who have been trying to get their HIT system to work properly for the past five years. The cost of NHS’ HIT has escalated to six times the original estimate — the U.S. equivalent of $18.4 billion — to serve just 30,000 physicians in 300 state-run hospitals, a fraction of the health care providers in the United States.

In January, Public Accounts Chairman Edward Leigh reported to fellow members of Parliament that essential systems are late or, when deployed, do not meet expectations of clinical staff. HIT is such a mess that Leigh recommended funding alternative systems if matters don’t improve within the next six months. But even if HIT is eventually junked, British taxpayers will still have to pay for it.

Freiherr goes on:

Parallels between this snake-bit program and our own are a little disconcerting. Like the one in the U.K., the U.S. initiative to digitize patient records is coming from the top down rather than the bottom up and it has tight deadlines. The White House-driven initiative will begin implementation already next year, wagging a carrot in the form of front-loaded reimbursement initiatives. After five years, the carrot turns to stick, as penalties come into effect for providers who haven't jumped on board.

Dr. Howard Brody, a medical ethicist who was quite in favor of EMR's, has the following rather pessimistic observations:

Shift your attention to Britain, where doctors' practices and the government have been way ahead of the United States in implementing EMR (virtually all British general practitioners have EMR in their offices). To finalize the shift away from paper records, the British National Health Service had planned a massive campaign (costing 12 billion pounds) to integrate all patient information in a single, grand national system.

Despite high hopes, it has not happened -- and it may never happen, now that the economic crisis has dried up funding. At some sites, as soon as they tried to go live with the new EMR, the computers crashed, and systems people could not fix the problems.

Some American critics think they know why the huge investment in the U.K. was a flop. No one in charge seemed to really know anything about the field of health information. The leader of the enterprise was a computer expert brought in from Cadbury-Schweppes, the candy and soft-drink company.

More worrisome to these critics is that the most vocal gurus leading the charge for the EMR in the U.S. seem blissfully unaware of these huge problems in Britain. They seem poised to repeat all the same mistakes.

My take on the American setting is EMR is wonderful when done well. "Well" means the software is designed by people who understand the needs of the end users (patients, doctors and nurses), and the implementation process is highly user-friendly, with tech support readily available at all times.

The worst disasters occur when a poorly designed EMR is crammed down people's throats by leadership without real buy-in from those in the trenches. What happens then, simply, is people who are supposed to use the system end up sabotaging it, and the millions spent to set it up go down the drain.

One hospital specialist in Boston wrote about his new multimillion-dollar EMR. It contains huge volumes of patient data, so huge you cannot find the important information among all the trivia. The physicians making rounds on the hospitalized patients have found the only way to keep sane is to scribble notes on 3x5 index cards as they go.

I'm getting more worried by the moment.

To be fair, Freiherr offers some hope for us viz-a-viz the British fiasco:

In some ways, the U.S. goals are loftier than those in Britain. The U.K. initiative had a much longer ramp-up: from 2002 to 2010. Also, it was to be spread over a smaller population: about 60 million versus 300 million. Where the U.S. plan has an advantage is in its goal. Rather than creating a centralized, national medical records system, the U.S. plan seeks to improve the efficiency of health care. Specific milestones will come from a still-evolving definition of "meaningful use," one that bureaucrats and providers are trying to scale up over the five-year period of adoption.

Also working to the advantage of the proposed U.S. initiative is a much more evolved IT infrastructure. When the U.K. program began, vendors had neither the technology nor the expertise to meet its ambitious goals. Things have changed since then. Best-of-breed IT systems continue to flourish, but they have become more comprehensive, spanning entire health care enterprises. The expertise to run these systems is beginning to develop as well. Earmarking grants for what will likely serve as HIT "centers of excellence" to serve as examples of how the technology can be successfully applied will add to this expertise. These centers may also serve as places where staff from other facilities can be trained before they jump into their own EMR systems.

But from the radiologic standpoint, there is a critical omission in our program:
Not yet addressed, however, is how the many currently operating HIT pieces, such as RIS and PACS, will be leveraged. To ignore them in the sculpting of a comprehensive EMR would be disastrous, as it would leave out critically important parts of the diagnostic process. And even if the decision to involve them in broad-based EMRs is made, there is no certainty that available interfaces will be up to the task.
Based on the British experience, and the limited implementations here in the States, EMR is probably not quite ready for a massive, immediate roll-out. This begs the question of why EMR has suddenly become a priority. From James Bovard, writing in the American Conservative (sorry about that, Sliberalins...):
But the feds have no technological silver bullet to distribute to docs across the land. David Kibbe, a top technology adviser to the American Academy of Family Physicians, warned Obama in an open letter late last year that existing medical software is often poorly designed and does a miserable job of exchanging information. Kibbe declared, “If America’s physician practices suddenly rushed to install the systems of their choice, it would only dramatically intensify the Babel that already exists.”

So, why the rush? As usual, there are two words that define it all: Money and Control. There is a LOT of money to be made when the government forces everyone to do something like this, and a lot of money to be spent. GE's early imaginative involvement gives us a hint of this. Again, from the American Conservative:
Obama’s plan offers between $44,000 and $64,000 to doctors who computerize patient records and up to $11 million per hospital. “On the stick side of the equation,” the Wall Street Journal reported, “the measure includes Medicare payment penalties for physicians and hospitals that are not using electronic health records by 2014.”
As for control, just think what mining the data of a national EMR (or network thereof) could produce. The possibilities could make an insurance exec or a plaintiff lawyer salivate. How about finding out who smokes, whose cholesterol is too high, and so on? Privacy? HIPAA? We'll have to rely on that, won't we? We all trust our government with our most private information, don't we? You might as well. . . Perhaps I'll add a corollary to my inflammatory statement: If the Goverment has access to your health care data, it controls your life. Bovard continues:

The issue is not whether the personal health information the government commandeers will be abused. It is simply a question of when, where, and how.

Medical data does not simply track the number of times a person goes to the doctor seeking a cure for a runny nose or stubbed toe. Medical records can include details of long-ago abortions, impotence or sexually transmitted diseases, anti-depressants and mental breakdowns, AIDS or HIV status, or any number of diseases. No information is more integral to a person’s existence—or more deserving of discretion.

We now know that psychologists were brought to the prison at Guantánamo to exploit detainees’ weaknesses for interrogation purposes. Do the millions of Americans who have received psychological treatment want government agents to have access to their vulnerabilities? Suppose that when a policeman pulls you over for a speeding ticket he can quickly tap into a database with your health records, including any therapy. Even before he walks up to your car window and demands your identification, he will know if you have a “problem with authority.”

And just so you know I'm playing fair:
But the biggest betrayal occurred with the Health Insurance Portability and Accountability Act of 1996, known as HIPAA, which left the Department of Health and Human Services to define medical privacy. When HHS finally proposed regulations in the last month of the Clinton presidency, it noted, “The electronic information revolution is transforming the recording of health information so that the disclosure of information may require only a push of a button. In a matter of seconds, a person’s most profoundly private information can be shared with hundreds, thousands, even millions of individuals and organizations at a time.” But the Bush administration blocked the proposed privacy regulations and instead issued rules that largely abolished a patient’s consent over the use of his own medical data. It rolled out a red carpet to industries hungry to exploit private health information.
Harvard law professor Richard Sobel observed, “HIPAA is often described as a privacy rule. It is not. In fact, HIPAA is a disclosure regulation, and it has effectively dismantled the longstanding moral and legal tradition of patient confidentiality.”
See? Even a Republican can set us up for abuse! This should scare us all the more.

Ultimately, I am actually for a national EMR/EHR, as it ties in with my thoughts on a widespread PACS database. But we have to do it slowly and correctly, with proper safeguards, lest we end up where the British are today:

Two major opposition political parties in the United Kingdom are in a debate over how to maintain electronic health records, according to a report in The Guardian.

The Conservative Tories would like to encourage patients to use services such as Google Health and Microsoft HealthVault.

Another party, the Liberal Democrats, support a $19 billion dollar government plan to build a national patient record database. The plan has been in the works since 2005.

With Google or Microsoft, "people can store their health records securely online; they can show them to whichever doctor they want," David Cameron, the current Tory leader said at a recent conference. "They're in control, not the state."

However, Barry Murphy, head of technology at PricewaterhouseCoopers told ComputerWorld UK that although using Google or Microsoft could save money, it could also lead to complications.

"It would...need to be accompanied by an explicit and implicit trust that the data would not be misused, abused or lost," he said.

The UK's National Health Service has been planning an electronic database for patient records since 1998, according to a study sponsored by the Robert Wood Foundation. The database is expected to see completion in 2014, four years behind schedule.

Yee Gads, folks! If you can't trust Google, you certainly can't trust the government! I'm not so sure about Microsoft, though. . .

1 comment :

Sardonicus said...

What a fantastic job you have done on this!

So many major issues touched on, I have more thoughts than I can get down, but here is a try....

You (and I) both are deeply into digital medical information, but you (and I) see the hazards that it brings with it. Unlike the bureaucrats who simplistically declare that all medical information will be put into computers. It seems that they have never seen the havoc that computer malfunctions can have. (None of our administrators understood that when the PACS system went down, NO patient images were viewable and therefore they needed to close the ER. This had to happen 3 or 4 times before they got it and duplicated the storage systems).
As you point out, those mandating the EMR appear to have no experience with it. It is simply, in their minds, an obvious thing to do. They do not appear to have the experience to know the hazards. If you might permit me a political comparison, Marx realized that it was a very good idea to share incomes throughout society. Implementation of that good idea ran into a few major problems.
Another point that can be absorbed from what you have written is that the national EMR is not a single investment, but rather it is a system that encumbers future funds. Just as the highway system is now requiring large amounts of money just for maintenance, so will this.
TR Reid, a writer for the WaPo has just released a book about other countries' health care systems. I heard him discuss it on Fresh Air (available on iTunes). He describes the French system, wherein the patient comes to the doctor and presents a card with all of his information on it, the doctor puts it in a reader. The Patient is thus in possession of his information. Of course, there was probably a central repository, where the data was kept in order to burn that card, but it brings to mind the possibility of a decentralized system, where there is no central repository, where the patient holds the data.

The discussion of privacy is fascinating. I hadn't thought of HIPPA as a disclosure regulation. I would like to read it (fat chance) and understand it (even more unlikely) to know if I have the right to opt out.

In summary, Dalai, this is an important piece of work you have done, and I think it needs to be on the national radar.