pictures big and little

I woke up yesterday morning with a sore throat and a headache.

Here we go again. Having a compromised immune system is no picnic. In the last year, I missed my Toronto book launch because of the flu, got H1N1 on the day the vaccine became available, was hit by Norwalk virus when my spouse was away (and found myself crawling along my kitchen floor with a can opener to "make dinner", got pink eye and more little flus and colds than I want to count.

Chemotherapy destroys cancer cells. It also destroys the cells that fight illness. Despite the fact that I try to limit my exposure to germs, wash my hands regularly, get enough sleep and eat well (not to mention the ten doses of Neupogen with which I inject myself after every treatment), I seem to fall prey to almost every little bug that passes my way (and when you have kids, lots of little bugs pass your way).

I am, literally, sick of it (I've also had benign paroxysmal positional vertigo. That had nothing to do with my immune system and was mostly just an annoyance. And when I realized that I did not have a brain tumour, I was actually kind of amused in a "of course this would happen to me at this point in my life" sort of way. Also, my golden, Emma, had a couple of bouts with geriatric vestibular disease, which I think is basically the same thing).

I need a break from chemo and I'm taking the month of April off. On the day when I would normally be at the cancer centre, I will be travelling home on the train from Toronto with D. (we will have been visiting grandparents, hanging out at the Bat Cave at the Royal Ontario Museum and the Harry Potter Exhibit at the Science Centre).

I'm not losing sight of the bigger picture, though. I have a CT scan today (abdominal and thoracic) and I am worrying about it. 

Because I always do. 

I'm fretting about my veins and how many times (and where) they'll have to poke me before they can inject the contrast but I'm also anxious about what the pictures will show.

Hopefully, everything will look normal and healthy, except for the scars that cover my liver. Hopefully, I can add this to my least of clean scans. And, hopefully, I can keep going through this routine, with the same results for years to come.

I haven't started to take the clean scans for granted. I doubt that I ever will.

10 things to do in april

This month, I actually wrote up my 10 things and posted them over at BlogHer on April 1st. And then, I let chemo and the long Passover/Easter weekend sidetrack me. I seem to be somewhat lacking in motivation on the blogging front these days. 

I have lots to say but I don't always feel like saying it.

Perhaps blogging should be on my list of May 'to-do's.

For now, though, here is how I did in March (completed in blue, partially done in green and not even started in purple):

 

1. Finish re-reading the draft of my novel (carried over from February). I discovered when I reached the end of the document that I had just stopped writing when I'd written the required 50,000 words. The story has no end. And needs some serious editing. That will be a goal for a future month.

2. Organize my clothes and my closet (carried over from February).

3. Graft the toes on the socks I'm knitting for my sister (carried over from February). It barely took an hour to finish these suckers. Should have done it ages ago. Now my sister will  have some nice wool socks, just in time for summer.

4. Do an average of 5 hours of cardio exercise every week (Revised from February).Really, this should almost be in blue. I fell short by less than an hour, so I'm pretty pleased with myself.

5. Make soup once. Sweet potato, spinach, red lentil. It was a recipe from my nutrionist (see below) and it was yummy.

6. Spend an average of 10 hours writing per week. I permitted myself to write this in green because I did do some writing in March but I didn't even come close to reaching my goal. I blogged 10 times and wrote in my journal with reasonable consistency but that was pretty much it.

7. Make and keep an appointment with a nutritionist to work out a plan to improve my diet, then follow it. I did do this one and have begun to make some changes to my diet. And, although I fell pretty much completely off the wagon over the long weekend, that was in April so it doesn't count.

8. Get my bike back on the road. It's been tuned up and ridden. When the weather is nice, I am going to continue to make my bike my main form of transportation.

9. Mend/wash/block my hand knit scarves. There are five of them. Three are mine and one is an unfinished present. None of them should take very long and it would give me a tremendous sense of accomplishment. Update: After stepping away from this and considering what I have on my plate, if I get two scarves done, I will be happy. I finished one. Now it needs to be delivered to the recipient.

10. Buy a swimsuit that fits (ugh). I tried on a couple of swimsuits but didn't find any that comfortably fit my long torsoed, plus-sized, one breasted body. I initially thought I would carry this one over to April but have changed my mind. This one's traumatic and will be a longer term project.

 

So that makes (more or less) 5 finished tasks, 4 partially completed and one not yet begun.

 

I'm really enjoying this process. I'm getting things done that I might not otherwise. It's gving me a sense of structure and accomplishment. 

 

Here is my list for April:

 

1. Write a first draft of the short story I've been kicking around (I have a writing buddy now, who's going to give me feedback. I have promised to deliver something for her to read by the end of the month).

2. Spend an average of eight hours writing per week (I'm already behind but it's not too late to catch up).

3. Do strength training at least once a week and continue with the five hours of cardio per week (I am on track with the cardio but have done one set of situps exactly once, so I need to get moving on the strength training).

4. Sort through my clothes (carried over from February and March).

5.Make summer plans for my family.

6. Brush my big (shedding) dog once a week and my smaller (non-shedding, tangling) dog every other day (the little dog has been brushed twice, which is probably twice more than she was groomed in March).

7. Update my Ravelry project page.

8. Finish another scarf.

9. Make soup twice (I have a jambalaya stew in the slow cooker right now).

10. Get a hair cut.

It's not too late to play along!

A Handy Summary & Insights From the JAMA Article on Simple and Complex Lumbar Surgery. Shared Decision Making Anyone?

Whew! After reading (for example, the New York Times) about a recent JAMA report on back surgeries, the Disease Management Care Blog was ready agree with some of its sister blogs that the nation's spinal surgeons have run amok. If you accept what the media has to say, the rate of complicated and expensive spinal surgeries are going up, up up, leading to patient harm and national bankruptcy.

In the meantime, primary care physicians have been working tirelessly to shield patients with chronic low back pain from the allure of quick surgical fix. We know that once a patient falls into an orthopedists' orbit, there is no turning back from the toss-up proposition: in exchange for a back scar, there is a good chance the symptoms will get better, but there is also a chance of developing the dreaded failed back syndrome. 'Go home,' said the DMCB to many of its fragile and high risk patients, 'and let me help you learn to live with your symptoms.'

Which is why DMCB decided to not take the media's word for it and read the JAMA article for itself.

Richard Deyo, Sohail Mirza, Brook Martin, William Kreuter, David Goodman and Jeffrey Jarvik tapped the Medicare payment claims databases to compare 2007's spinal surgeries to prior years. Insurance claims are an important tool for researchers, because Medicare and other health insurers not only record the amount of money paid, but other information including the type of surgery, the type of patient and other medical expenses arising from complications.

Their analysis focused on patients with 'lumbar stenosis' (information on what that is is here and here but bascially, it's a form of arthritis that causes back pain and pinches nerves) and divided the myriad surgery types into three broad categories: 1) decompression (if something is pressing on something causing pain or numbness, it is cut or chiseled out), 2) simple fusion (which is what it sounds like: joining parts of the bones of the spine together) or 3) complex fusion (a more complete joining of the spinal bones or doing it to multiple bones). The complex surgery is relatively new and typically involves use use of hardware. In addition to counting the three types of surgery, they also looked at concurrent diagnoses and complications.

In 2007, Medicare paid $1.65 billion for over 37,000 spinal stenosis operations. Compared to previous years, the overall rate of surgery was unchanged, i.e. about 135 per 100,000 Medicare beneficiaries. However, within that number, the percent of decompression and simple fusion surgeries declined and the percent of complex surgery proportionately increased in 2007 from about 1 per 100,000 in 2002 to 19 per 100,0000.

Complications occured in 3.1% of all patients and the death rate within 30 days was 0.4%. Complex fusion operations had a 5.2% complication rate compared to 4.7% for simple and 2.1% for decompression. When the authors statistically neutralized the impacts of age, gender, co-morbid conditions, other back problems and previous hospitalization rates, the odds of a wound complication, prolonged hospitalization stay, high hospital charges and a readmission within 30 days remained stastically higher in the complex surgery group group.

The DMCB's first instinct was to ask 'what's the big deal?' Despite an aging population, spinal surgery rates are flat and a big majority (85%) are still decompressive or simple. The death rate is less than 1% and complication rates are in the single digits. We could do better, but this is not a disaster.

As for the increase in complex surgeries, the DMCB's second instinct was to recall this past landmark article published in the New England Journal of Medicine. While the topic was "sciatica" (which is frequently but not always caused by spinal stenosis), it demonstrates two key insights about modern back surgery:

1) if patients are willing to wait up to a year, they may not need any surgery and

2) there are an increasing array of other invasive treatment options that deal with back pain, including various types of nerve blocks, injections and percutaneous microsurgeries.

That's important because it is possible that spinal stenosis patients who would have gotten the decompression or simple surgery years ago may, in 2007, be getting 1) rest or 2) the other types of treatments. That could account for some of the decline in the simpler types of surgery reported in the JAMA article. In addition, the recent increasing availability surgeons capable of performing new complicated surgeries could have attracted the kind of high risk patient that, years ago, would have been advised by the DMCB-type primary care physicians to go home. What's more, because they're sicker and have worse back pain, they can be expected to experience greater complications anway. Between the pull of old candidate patients away from the low intensity surgeries and the push of new patients to the high risk surgeries, the DMCB wondered if the results of Deyo et al were biased.

Not exactly, says an accompanying JAMA editorial by Eugene Carragee. He notes the accepted indications for the complex surgery includes spinal stenosis with "deformities" (for example, scoliosis) and that the JAMA research shows about half of the complex surgery group appeared to have "simple" spinal stenosis. Ignoring the "pull/push" bias described above, that's about half of the 19 per 100,000 Medicare enrollees (or 10/100K) who appeared to have unjustified complex surgery. Lacking any other explanation, it's possible that the economics are playing a role, i.e., complex surgery and the use of hardware is more remunerative to the hospital and surgeon, giving them an incentive to do more with more risk when less with less risk will do.

What does the DMCB think?

1) It's not THAT bad. The majority of spinal stenosis surgeries are not complex. Of the ones that are complex, only about half or 7% of the total seem to be for questionable indications.

2) Despite an aging population and significant health care inflation, the overall rate of spinal stenosis surgeries are flat from year to year and many patients that would have gotten surgery years ago are probably being treated with less invasive, safter and cheaper alternative care options.

3) Medicare's ability and track record in dealing with a 7% problem in spinal stenosis surgery is not good, so the likelihood of a solution is distant at best. In managed care, however (and that includes Medicare Advantage) the solution is unfortunately simple: ask the surgeon to justify the medical necessity of the complex surgery ahead of time - or no payment. It's a hassle, but it works.

4) The other approach is retrospective audit, which has been used by Medicare in other circumstances. Unfortunately, the science of complex spinal surgeries is complex and once you get into the medical charts, it's not as simple as Deyo et al would suggest.

5) Which brings us back to shared decision making, which was written into the health reform legislation. In the opinion of the DMCB (and this writer in the NYT), this holds the best promise of tempering out fancy for really big surgeries, because 1) sharing the insights above in an unbiased and patient-friendly way and 2) then letting the patient decide based on his or her own symptoms and values may be the best tool in addressing how and when Medicare covers surgery.

Here's to hoping that we get there soon.

JAMA Article on How to Increase the Involvement of Physicians Falls Short

Writing in the latest issue of JAMA, Drs. Erica Spatz and Cary Gross of Yale's Robert Wood Johnson Clinical Scholars Program share their insights on the immediate and concrete steps that physicians can take to improve the health care system.

They also unwittingly demonstrate the atrophy of higher order cognitive brain functions that result from the reality deprivation that afflicts many of our finest medical schools. Non-inhabitants of the academosphere that read JAMA may think these bright docs speak for the avant-garde of the mainstream physician community. That would be a mistake and would only make the Disease Management Care Blog's migraine worse.

The Disease Management Care Blog summarizes Drs Spatz's and Gross' suggestions below.

1. Work Daily to Provide High Quality Care - physicians should adopt 'new approaches' to measuring and improving quality of care.

2. Control Costs - physicians can act locally/think globally and 'consider' the costs of medications, tests and treatments.

3. Improve Communication - this can be achieved via electronic records, information exchange systems. giving lists to patients and 'shared decision making.'

4. Become Involved Locally - physicians should get involved or even volunteer in 'community based programs.'

5. Help Implement Creative Payment Reform Solutions - the 'several testable options' underway for control costs and increasing quality cry out for physician participation.

6. Talk About Reform With Patients - patients trust physicians to give them the insights they need about 'why change is needed.'

7. Minimize Conflicts of Interest - with the 'pharmaceutical' industry.

While the DMCB agrees with the technical merits of each of these seven points, they are astonishing for their their emphasis on the traditional role of the physician that still continues to be perpetuated by an unresponsive medical education system. Maybe the folks at Yale haven't heard about the emerging consensus on teaming, health consumerism, systems of care, increasing complexity of insurance designs, growing sense of alarm over health care costs, novel approaches to physician reimbursement, coming heavy-handed involvement of the U.S. government and work that remains in making health information technology useful.

The DMCB wishes that JAMA's editors had demanded more on behalf of their physician readers.

Anyone paying minimum attention to what is going on in health reform knows there is far more to the story at the bedside, the clinic and the community:

1. Work Daily to Provide High Quality Care - like it or not, physicians need to adapt now to new expectations and changing work roles that increase the delivery of high value. For example, they need to become experts in optimizing local work flows and the 'systemness' of leading non-physicians in ways that help their assigned patients maximize self-care.

2. Control Costs - physicians need to be responsible for helping patients and insurers navigate through increasingly complex insurance benefit designs with increased out of pocket costs. For example, they need to demand that HIT decision support also helps patients make decisions about care options that are aligned with their personal values and their pocket books.

3. Improve Communication - this can be achieved not only via electronic records, information exchange systems, giving lists to patients and 'shared decision making,' but through web-based and 'push' cell phone technologies, support of personal health records and better coordination with resources that include, but are not limited to, insurers and community groups.

4. Become Involved Locally - physicians should not only get involved or volunteer in 'community based programs,' but communicate with their elected representatives, join at least one organized medicine group (there are options that range from the AMA to PNHP to PSR), write letters to the editor and serve in one or more advocacy groups - and that's just for starters.

5. Help Implement Creative Payment Reform Solutions - physicians need to be highly skeptical that any of the pilots and demos will be enough to reconcile escalating health care costs, limitless demand and ballooning government deficits. If there are any good ideas out there, now is the time to talk about them.

6. Talk About Reform With Patients - it's time for physicians to trust and listen to their patients so that they can gain better insights about 'why change is needed' and how to make it happen

7. Minimize Conflicts of Interest - physicians need to decide which is worse: the appearance of being fixated on preserving income while being played like puppets on a string by a government incapable of fixing the Sustainable Growth Rate, or, taking a huge cut in income that is likely to occur sooner or later anyway while preserving our self respect. Right now, the DMCB can't tell which is worse for the profession.

The Latest Cavalcade of Risk Is Up

During its residency training, the Disease Management Care Blog participated in an annual party in which it and its fellow trainees would put on a show with a series of skits mocking the faculty, the administration and the other specialties. Everyone knew, however, that the worst fate for the individuals in our very target-rich environment was to go unmentioned.

Ironman of Political Calculations takes an opposite tack in the latest Cavalcade of Risk and mentions everyone with a fabu assessment system that mimics bond ratings. If you're looking for capital at low interest rates, you don't want digits other than the treasured A, a or 1; if you're looking to avoid the delicious insults that come from being off topic, making readers stoopid or having painful writing, you don't want digits like C, c or 3.

AND as an extra bonus, Ironman offers an on-screen calculator that reconciles your income, projected tax penality and the cost of a health insurance policy to help you decide whether to pay or play Massachusetts style.

The Disease Management Care Blog? It has an Ironman rating of Aa2.

The DMCB is also proud to report that it was also mentioned in a host of resident skits after it became a faculty member.

Health Affairs and Their Issue on Health Information Technology: Your DMCB Helps You Take A Tour

If you're mystified by the continuing folderol over electronic health records (EHRs), you may want to head over to your closest medical library and take a look at the latest April 2010 issue of Health Affairs. It has a good spectrum of informative articles on the Feds' efforts to promote adoption of EHRs, the debate on meaningful use, some of the usual pro-EHR fluff, what's going on in physician practices nationwide and - and kudos to the HA Editors on this - some warnings about where this technology falls short. You can read more about the issue at the Health Affairs blog.

Alternatively, since you are one of the thousands of savvy Disease Management Care Blog readers, all you really need to do is get a cup of an appropriately caffeinated beverage, adjust your monitor, sit back and quickly scan this encapsulated summary. THEN you can decide which articles warrant use of your precious time for closer inspection:

In her opening article, Editor in Chief Susan Dentzer points out that only 6% of hospitals and 2% of physicians rely on EHRs and that the Feds are banking on a combination of sticks and carrots to encourage them to adopt "meaningful use" EHRs. She notes the taxpayer's $29 billion investment in the HITECH legislation hinges on getting the definition of meaningful use right.

There's a Health IT Gold Rush Underway, says Nancy Ferris, thanks to HITECH's $750 million in grants and contracts going to 40 States and 30 non-profit organizations that, in turn, are supposed to facilitate health information exchanges and technical assistance. There'a another $225 million going to train people in information technology, courtesy of the Department of Labor. That's just for starters, and a pittance compared to the more than $14 billion that will go to physicians (as in $18,000 per doc per year) and hospitals. You can also get her summary of the five key goals of HITECH and wonder if it will be enough to prod physicians into spending an estimated $30,000 apiece for a functional EHR.

Want a screen shot of what the docs at Kaiser Permanente see when they're taking care of patients? It lists chronic conditions, immunizations, vital signs (including obesity), care suggestions ("flu shot due, Active tobacco use, advise quitting"), recent lab tests and a list of medications.

What happens when you put an ex-national coordinator for health information technology with the current coordinator for health information technology in the same room? After reading this exercise in mutual admiration and closed circular reasoning, the DMCB asks who really cares?

John Halamka is the blogging CIO Beth Israel and Deaconess and likes what he sees in the emerging definitions of meaningful use, but has some suggestions about increased governmental guidance without stifling innovation. Those suggestions include content specificity, creating better vocabulary subsets, better approaches to data transmission, and heightened secruity and quality reporting. This article - by someone well versed on how to use the written word - gives some insight as to why getting into the weeds of health information technology is not easy.

Sean Hogan and Stephanie Kissam of RTI International suveyed 4,484 physicians with a 2,758 responses (an impressive 62% rate). They found that 18% have at least a basic EHR and, depending on the which part you ask about, about 75-85% meet the various individual meaningful use criteria. The DMCB asks how many physicians met ALL criteria simultaneously, a number that was apparently not mentioned in the report. The DMCB also wonders if the other 82% of physicians, after reading this paper, might think they made a smart move by waiting.

James Ralson and other colleagues from Group Health report on that organization's experience with the system-wide implementation of an EHR, a patient centered medical home model of care and a web portal through which patients could view their test results, request medication refills and email their physicians. Before you take the time to read this, the DMCB warns there doesn't seem to be any new insights on how to pull this off outside of integrated delivery systems.

David Bates and Asaf Bitton of Brigham and Women's have some thoughts on how health information technology can be configured to better support the patient centered medical home. While they think the two are inseparable, they have some specific suggestions on how to achieve better clinical decision support, registries, communication capabilities that enable teaming, tracking of hospital discharges, patient friendly personal health records, enabling of remote monitoring and support of quality reporting. The DMCB agrees wholeheartedly, because much of this is already being used to great success in commerical disease management programs.

"Warning!" says Rushika Fernandopulle and Neil Patel, who describe How The Electronic Record Did Not Measure Up To The Demands Of Our Medical Home Practice. With great expecations, AtlantiCare started up a PCMH in New Jersey and found they were stymied by computer slow-downs, e-prescribing security glitches, inabilities to import lab data, clinical alert fatigue, increased physician busy work, too much effort reconciling medication lists, having to rely on an outside vendor, lack of a registry and inflexible on-screen templates unsuitable for non-physicians and group visits. They eventually turned to other software solutions to operate in parallel fashion.

Using "Analtyica 4.1 modeling software", Colene Byrne and colleagues from the "Center for It Leadership" performed a cost-benefit analysis of the Veteran Administration's $7.16 billion VistA EHR. Thanks to projected reductions in adverse drug events, diminished duplicate lab testing, reduced work, decreased operating expenses and more freed space, the cumulative yield in benefits net of costs was $3.09 billion. Before you take the time to read this, the DMCB again warns there doesn't seem to be any insights on how to pull this off outside of the VA, even if you accept the black box analysis.

Catherine DesRoaches and other colleagues from Mass General, George Washington University and Harvard find a poor correlation between hospital adoption of electronic health records and measures of quality. In a companion piece, Jeffrey McCullough and colleagues from the University of Minnesota found a better correlation in hospital quality but many of the outcomes failed to reach statistical or even impressive clinical significance. After reading this, the DMCB wonders if the other 94% of hospitals waiting on the sidelines are thinking they are doing the right thing.

But the debate about hospital-based computerized physician order entry (CPOE) is over, right? Well, maybe not exactly. While previous studies have shown CPOE without a full fledged EHR can reduce medication errors and save lives, Jane Metzger et al show the systems aren't perfect. Using a simulation tool in a sample of hospitals that volunteered to go through this, only 53 percent of the medication orders that would have resulted in fatalities and 10–82 percent of the test orders that would have caused serious adverse drug events were detected. Uh oh.

Oh, never mind says Susan DeVore and Keither Figlioli of Premier health care alliance. They surveyed their hospital members and found the road to EHR installation is lined with gradual implementation to account for objections and work-flow hiccups, clinical champions, lots of staff training, meaningful quality-based decision support and reporting, high security, clear policies and budgets that can handle the unexpected and pay the clinical champions.

Phyllis Torda, Easther Han and Sara Hudson Scholle of the NCQA interviewed 'knowledgeable people" about the implementation of EHRs and found no problem cannot be solved by assistance, consultants, trust, engagement, expertise, sophistication, realism, operational excellence, program redesign, selection of the right software and hardware and sustainability. See... it's that easy! Check out the list of insider knowledgeable people and you'll see why.

Alan Hinman and David Ross go back to the fundamentals and review the building blocks of EHRs, health information exchanges and immunization registries, suggesting the latter may be a good way to tie everything together. The DMCB thinks there may be something to this learn to walk before you run approach.

Good grief you made it to the end of this summary. If you are that interested in the topic, the DMCB suggests you head on over to Vince Kuraitis' e-CareManagement Blog where he has inaugurated a series of very informative posts on HITECH.

Disease Management: A $2.3 Billion Industry That Speaks to the Wisdom of Markets

Looking for a way to convince naysayers that the disease management industry is not only surviving, but thriving? Look no further than this well written 'DM Grows, Though Under Fire' article appearing in Managed Care Magazine. Despite an awful economy and decreases in covered lives, DM industry revenues in 2009 increased to $2.3 billion. Compared to previous years, the percent increase was 'only' in the single digits.

Despite the deserved success of DM, the article hints that the Disease Management Care Blog's friends in the industry are continuing to fret about their second class status among academics and policy makers. Be of good cheer, says the DMCB: Chris DeMuth may have it right. It should be no surprise that the evidence-based dons would be unmoved by DM's prosperity. After all, they favor centralized rationality as the answer to organizing health care and view markets as an antiquated impediment to their plans for the proper, appropriate and approved application of science.

In the meantime, according to the 'DM Grows' article, nimble DM companies are finding ways to engage patients in achieving evidence-based approaches to care with motivational interviewing, assessing readiness to change, focusing on medication compliance, tackling undetected depression and coordinating care for more and more diseases. Faced with plenty of successful anecdotes from an appreciative workforce, rigorous in-house assessments of financial returns and a greater appreciation for the value-creation that comes from health, the 'steely-eyed, green-shaded CFOs and actuaries of corporate America' are buying it: figuratively and literally.

Who can blame them? Compared to what the Feds will be spending between borrowed Yuan and American tax dollars, they've calculated that $2.3 billion is a good investment.

If readers are looking for a way to convince more companies and insurers that they should invest in DM,the DMCB suggests giving them a reprint of this article. When they see what their competition is up to and why, they'll quickly change their minds.

And hopefully, our academic friends will stay out of the way.