Information Overload in Healthcare

Physicians are drinking from fire hoses that are fed by the expanding number of systems and information sources. Dealing with this information explosion was the subject of a recent posting by KevinMD on his blog titled "How a wealth of information takes attention away from the patient" (it was a reposting from Abraham Verghese blog originally called "A Theory of Attentivity"). Despite a prime time for working inpatient coverage as residents and senior residents reach the end of their training year and are better and more experienced it has as he describes it, gotten more challenging for the mountain of data that:

...exists on each patient. It’s a surprise every time, a feeling analogous to revisiting Bombay or Madras after years of being away and finding that a city you did not think could get more congested, has done just that

We add voluminous quantities of notes and data to a patient that represents the ever increasing haystack of patient data. IN fact as he quotes from a 1969 lecture:

What information consumes is rather obvious: it consumes the attention of its recipients

Or as he paraphrases TS Eliot with an excellent quote:

knowledge can get lost in information, just as wisdom can get lost in knowledge

Leading to a lack of attention to the patient. It's not just data as I highlighted in this post "Doctor Please Look at me not Your EMR" that stemmed from my daughter's visit to our local pediatricians office. While I understand the desire to push a "poverty of attention and agree that the computer should not rule the interaction as this hinders and in some cases destroys the clinical diagnostic process we do need to address this information problem.

The clinician interaction needs to be captured. Providing a point and click technology to capture that detailed process that he suggests to his student that demands:

getting as much as he can from listening to the patient, from sounding the body

Will never be captured in a drop down list or check box. This is the information in the narrative. But if we just load narrative it will provide little value as it just adds to the hay stack and clinicians will be relegated to turning pages of information in the eBook reader (better known as an EMR). For this information and knowledge to be useful it must be computer interpretable and usable by machines automatically. This is the strength that Healthstory format and structure brings. Allowing for the capture of the narrative but attaching codes and structure to that content that makes it useful.

The case is made - we need to keep the clinician patient interaction and preserve that content but it needs to be made useful. Filling in forms and selecting from drop down lists is not going to satisfy that need and worse may well limit the capture of rich detailed knowledge that is an essential part of that patient discovery process. Helping to bridge that gap is the Healthstory project that allows for both worlds to coexist happily.

Have you joined?

Standards and Interoperability

It has been an interesting week of rhetoric and emotional outbursts for and against healthcare reform. In amongst the many articles I found this post from David Kibbe on the Healthcare Blog: Why Standards Matter - the True Meaning of Interoperability; a word that he believes that the American people are skeptical of.

You only have to take a quick visit to one of the personal health record systems Google Health or Microsoft HealthVault) to understand why when he says:

interoperability is a hugely important word in the context of today's ongoing debate about the use of EHR technology by physicians, hospitals, and patients too

It is not just an important work, it is an essential component of any future innovation in healthcare. At a recent meeting of the HIT committee several of the members acknowledged that

didn't really know" what interoperability means

Yikes! Frightening if the advisers don;'t have a good handle on what this should mean. He is right that there is complexity in a precise meaning of interoperability since there are many levels and the post contains some good descriptions on the various levels and elements of interoperability - for instance data, words, formats, layout etc. But as he rightly points out capturing medical information in PDF format does not make it truly interoperable and in the example h cites of loading his living will into Google Health this is simply an online version of the Amazon Kindle. Interesting and may be useful to have but not really interoperable.For it to be interoperable the information contained in the files should be in a standard format and the example here is XML (the underlying basis of web pages that you are reading this blog on). XML is an open standard and has a lot of flexibility (as we have seen with the advent of even more creative web pages and Web 2.0 type applications)

The essence here is the need for standards that are the industry and users of the information need to agree on the standard. We need to move past the VHS/BetaMax or BluRay/HDDVD debate and to a set of standards that everyone can use.

At this point standards have not been agreed and there are still some competing standards but XML does seem to be an underlying technology format of choice and is in use Healthstory. Based on Clinical Document Architecture (CDA) that uses XML this format allows for the capture of free form narrative linked to encoded content such that the Diabetes in the note can be identified by a computer systems as ICD9 Code of 255.0 - Diabetes Mellitus). Already some systems will import medical information encoded using XML type standards and this is likely to increase. As you think about your health record you should be looking for providers and technology that will export your information in a meaningful format that can be reused in other systems and applications. Start looking for your records in interoperable format - and insist on the full story not just extracts or sub sets of the data.

More is Not Better

It is customary to believe that more is better. Higher availability and more access = better care...right? Wrong! A recent interaction at the pediatricians office amplified the point and the influence that the patient can have. In a case of extended week long general malaise some level of investigation and therapy was warranted and we agreed on some basic blood work. But in the conversation with the pediatrician she explained that many of her patients were insisting on "Lyme Titre's" based on local reporting of "huge increases in Lyme disease". Nationally the incidence runs around 0.04% and is considered "rare". I could have insisted but logically it made no sense - there had been no possible instance of exposure to risk factors (tick bites) so what would that test bring. But my choice was clearly not the norm.

It is this excess utilization driven by the system that is detailed in in Atul Gawande article penned a another insightful piece in the New Yorker that shreds the notion that we are getting better care just based on higher access. "The Cost Conundrum" is the talk of the town and rightly so.

In his tale of two cites - 800 miles apart in Texas the data available on healthcare costs and results shows that McAllen, Texas is spending approximately twice the cost (~ $15,000 per enrollee). Currently Medicare income per capita is $12,000....! In El Paso - some 800 miles away the costs are half as much running at around $7,504 per enrollee. Similar mix of demographics and public health statistics.

His discussions with local residents and providers was revealing in the wide variation of possible causes:

• McAllen is providing unusually good care (it's not)
• Better technology availability (it's not)
• More doctors (no difference)
• The service is better
• Malpractice is a bigger problem (not based on the recent Texas law capping malpractice claims)

In Fact on the quality metrics published by Medicare:

Nor does the care given in McAllen stand out for its quality. Medicare ranks hospitals on twenty-five metrics of care. On all but two of these, McAllen’s five largest hospitals performed worse, on average, than El Paso’s.

Not only is the cost troubling but the outcomes show that the population is not getting value for their expenditure. As is so often the case if you follow the money" the answer becomes evident. Our system incentivise use not results. As the cardiologists put it when asked about a hypothetical patient with chest pain that goes away and has no associated family history or other clinical indicators to suggest heart disease...

“Oh, she’s definitely getting a cath,” the internist said, laughing grimly.

And for many patients this would be a great outcome. They got the test they needed and ruled out heart disease. Not so for the sub group who are unfortunate to suffer complications some minor and transient and some major and permanent (you can get a good overview of the procedure and complications here):

The1-2% of people who get major complications from the procedure, the 0.08% who die from the procedure, the 0.03% who have a myocardial infarction precipitated by the procedure, the 0.06% who have a devastating stroke or the 0.62% or 0.06% depending on the approach Hospital Acquired Infection, the 1% who have an allergic reaction to one of the many agents used, the 1% who may go on to develop renal dysfunction....still feeling good about the investigation?

In McAllen the analysis of the Medicare data revealed some troubling variation compared to El Paso:

Between 2001 and 2005, critically ill Medicare patients received almost fifty per cent more specialist visits in McAllen than in El Paso, and were two-thirds more likely to see ten or more specialists in a six-month period. In 2005 and 2006, patients in McAllen received twenty per cent more abdominal ultrasounds, thirty per cent more bone-density studies, sixty per cent more stress tests with echocardiography, two hundred per cent more nerve-conduction studies to diagnose carpal-tunnel syndrome, and five hundred and fifty per cent more urine-flow studies to diagnose prostate troubles. They received one-fifth to two-thirds more gallbladder operations, knee replacements, breast biopsies, and bladder scopes. They also received two to three times as many pacemakers, implantable defibrillators, cardiac-bypass operations, carotid endarterectomies, and coronary-artery stents. And Medicare paid for five times as many home-nurse visits.

As Atul Gawande put it:

The primary cause of McAllen’s extreme costs was, very simply, the across-the-board overuse of medicine.

The good news is that just having the technology does not necessarily translate into over use. The Mayo clinic in Rochester has some of the highest levels of technological availability but one of the lower rates of Medicare spending (in the lowest 15% of the country at $6,688).

At the core of this story is data - the lack of insight and availability of data was troubling:

It was a depressing conversation—not because I thought the executives were being evasive but because they weren’t being evasive. The data on McAllen’s costs were clearly new to them. They were defending McAllen reflexively. But they really didn’t know the big picture of what was happening.

The most expensive piece of equipment in the hospital is a doctor's pen. But this tool has been heavily influenced by knowledge and availability of best practices. Where best practices are well defined there is close alignment in the clinical choices. Where the science is unclear the variations arise from high levels of investigation (in areas of low cost healthcare delivery) to low levels and conservative treatment (in areas of low cost healthcare delivery). Overall the intent is not to over charge or provide more care but the underlying drivers change behavior for clinicians who try to cope with a complex and overwhelming system that they have little training to deal with.

To borrow form the Six Sigma and Deming's "Plan-Do-Check-Act" Cycle Six Sigma attacks problems with DMAIC

• Define high-level project goals and the current process.
• Measure key aspects of the current process and collect relevant data.
• Analyze the data to verify cause-and-effect relationships. Determine what the relationships are, and attempt to ensure that all factors have been considered.
• Improve or optimize the process based upon data analysis using techniques like Design of experiments.
• Control to ensure that any deviations from target are corrected before they result in defects. Set up pilot runs to establish process capability, move on to production, set up control mechanisms and continuously monitor the process.

Rinse lather and repeat. Critical to this process is developing measures and collecting the data to measure. But healthcare has lived in a wilderness of data both clinical and financial. Everything about the current system is focused on increasing volume in part to offset the decreasing levels of reimbursement. Creating systems like the Mayo that deliver care where "the needs of the patient come first" is at the core of the changes necessary. What is interesting is that most here would love access to the Mayo care but in the political battlefield the concepts and ideas are tainted as rationing and limits to our supposedly great service.

Everyone likes to bash the NHS in the United Kingdom and roll out the legion of complainers who list the reasons why the system is not working while failing to acknowledge the integrated care and access helps deliver better care. While the NHS may not be the perfect system it does encompass elements that we should learn from. I know which care I'd prefer to receive - that of the Mayo style; balanced and high quality. I avoid the McAllen experience where possible recognizing that the "MD" at the end of my name can influence the clinical interaction positively or negatively. I can invariable force the investigation or test if I choose to but I elect to be far more conservative in my approach for me and my family. As I did with the Lyme Titre and do repeatedly - I remain conservative bucking the trend.

Do you? Would you have insisted on the Lyme Titre or just accepted it when it was mentioned simply because you had heard about Lyme disease, were worried and your physician had mentioned it? More is not always better. What's your experience?