Pfizer Health Solutions, Florida: A Healthy State & more on Open Source

In the last two Disease Management Care Blog (DMCB) entries, we impertinently suggested the industry jettison the short-term competitive advantage of their clinical/claims data bases and adopt an Open Source “business model.” The chief advantages are 1) increased credibility, thanks to inviting independent confirmation of any conclusions, 2) the likelihood of new discoveries, thanks to more scientists (and eventually amateur-scientist lay persons) “mining” the data and 3) achieving the fullest manifestation of what Kaiser Permanente is teaching us: that the advent of these colossal patient/enrollee/consumer data bases in the disease management industry are an incredibly valuable resource that exceeds the biggest baddest electronic health record. The potential benefit to the general knowledge of mankind is great. So, by the way, is the good will it would generate.

For a good example, first congratulate the folks at Pfizer Health Solutions (PHS) for getting some important clinical outcomes into the peer review literature. Most readers of the DMCB will recall PHS is providing disease management services to portions of the Florida Medicaid population. PHS funded a study on the impact of their “Florida: A Health State” Program on a number of outcomes including blood pressure, lipids, blood glucose and asthma control among persons with chronic illness who were enrolled in their program. Morisky and colleagues at the UCLA School of Public Health found there was a clinically and statistically significant improvement across multiple care domains.

The improvement was detected by comparing the study population (with available data) to an age, gender, ethnicity, poverty level and time-point matched National Health and Nutrition Examination Survey (NHANES) data set using odds ratios.

While that sounds pretty easy (not), it seems to the DMCB that it was the control population that was the critical factor in the reaching the study’s conclusions. In addition, odds ratios, compared to other approaches, can be difficult to fathom. Stakeholders not familiar with research techniques (for example, the human resource person in charge of a TPA, or a staffer in a politician’s office) may have difficulty understanding the more subtle dimensions of interpreting these findings. Last but not least, the study was honorably, but let’s face it, commercially funded.

You may say I’m a dreamer, but imagine for a moment if the data from the “Florida: A Healthy State” were available gratis to other researchers who were welcome to confirm the results using another control group or another comparative approach. The DMCB thinks that the conclusions would hold up, that the transparency would reassure stakeholders in academia and policy circles that the findings are for real and, who knows, other important insights about the needs or care of persons with chronic illness would be closer to discovery.

Florida and its citizens would be better off for it.

cap in hand

The more observant among you will have noticed the addition of a "donate" button to my sidebar.

I've called it the "tip jar" to make myself feel better about having it there.

This is something I have resisted doing for a long time (although I have never judged others with these little do-hickeys) because it felt too much like sticking my hand out (which it kind of is). And, as cancer patients go (and actually, as people go), I am incredibly fortunate. I live in a country with universal health care, I have good private insurance, which includes long-term disability and we are a two income household.

But my income has dropped considerably on disability insurance (which is a percentage of what I was making when I went off and not indexed to inflation). And this blog (and by extension, cancer - the irony is not lost on me) has opened up a whole new world, in which I would like to continue to participate.

There are a number of conferences in the coming months that I would love to attend:

The World Conference on Breast Cancer , in Winnipeg, June 4-8.

BlogHer, in San Francisco, July 18-20.

The Cancer Bloggers Reunion (organized by the Assertive Cancer Patient), in Seattle, July 23-25.

Now, the world certainly won't end if I can't participate in these events but I would love to go to at least one of them. I do feel that I have a real contribution to make, that I will learn a lot and that my writing, this blog and my community (online and off) will all benefit.

So I am looking at myriad ways to keep costs down. But I'll still need to find funding to attend even one of these conferences. To that end, I have opened a savings account into which I am putting my ad revenue (a whopping $100 since December). And if anyone clicks on the tip jar, it will go in there, too.

So if something I write particularly resonates with you and you have a little extra dough, by all means, click away. Or if you've always wanted to buy me a beer (or a glass of wine) or even take me to lunch, now's your chance.

And a note to my friends who sent me to BlogHer for my 40th birthday last year and to my family members who have already been unbelievably generous: this request DOES NOT APPLY to you! In fact, I think the button won't work if you try to use it.

Off to chemo today. Not minding so much now that I know I'll have three glorious weeks off.

Disease Management & the Open Data Movement

In yesterday’s edition, the Disease Management Care Blog doffed a hat to Weng et. al and promised to tackle the implications of using disease management data bases for research. Here's a naive tackle for your consideration.

First off, note that biomedical “research” is any “systematic investigation designed to contribute to generalizable knowledge.” Pursuit of that knowledge is good. It makes life better for all of us and our children. What’s more, it doesn’t necessarily exclude a profit for the individuals assuming risk in sponsoring the research and taking the findings to market. That being said, the market does operate under a well described public interest that demands several attributes of research including 1) truth, 2) transparency 3) likelihood that the any benefit will become accessible by those who need it.

Even a cursory literature search using the terms “disease management” will yield up a host of studies with research findings that spell profit for the sponsoring companies. However, in my opinion, that’s a problem. While everyone knows classic not-for profit “academic” biomedical research is not free of its own problems, the published disease management literature has more than its fair share of incredulity from the market. The necessary attributes mentioned above are often lacking: many readers don’t believe the findings, criticize the underlying research methodologies and despair over its commercialized health insurer pedigree. There is an undeserved but real perception that pursuit of profits over populations is driving much of the conduct of disease management research.

So this blog has a partially thought-out proposal for the Disease Management Community :

Create or join the Open Data movement. Have courage and make the underlying important research data from any published studies or marketing materials freely available to everyone without restriction.

This is more than a doubling down of the NIH decision to “ask” its funded researchers to make their reports available on line. By becoming Open Data, the disease management industry would replicate and possibly exceed SHARe.

Naïve suggestion unlikely to ever see the light of day? You bet, but I offer up the following points that should mitigate some doubts about the wisdom of an Open Data paradigm:

• The doubts about the value of disease management are long standing and profound. This calls for a dramatic break-through approach.

• While the proprietary data have value, instances of that translating that value into a meaningful competitive advantage with a measurable ROI are few. Better to make the data available to researchers worldwide and build the next iterations of the industry on translational insights obtained in the public domain. The scientists out there are better at it anyway.
  

• The traditional research journals that have served as platforms for disseminating research findings have a short term problem and a long term problem:

• A) Over the short term, they have become part of the problem by allowing flawed research findings to get past their reviewers and editors. They are being out hustled by enterprising scientists who knowingly or unknowingly spin data and text. The market knows it.

• B) Over the long term, the arrival of change “Singularity” will not only make print media obsolete. In an online world, the authors’ interpretation of their research findings will no longer serve as the sole arbiter of truth. Instead it’ll only be the first. Given the ready availability of terrabyte data bases and easy to use analytic tools, the market is going to expect to take the data for its own test drive. I believe this will eventually include lay people but I note that SHARe is starting out by restricting access to qualified scientists. Better to anticipate this and start planning implementing now.

• Believe the mainstream academic journals are biased against disease management? See the point above.

• While disease management organizations and their share holders may fret over the possibility that their data could be used against them, a) the truth always seems to come out anyway and b) the industry is well established and is arguably not so vulnerable anymore. The "value chain" has become well established and will remain intact.

There may be implications for Regional Health Information Exchanges and on-line Personal Health Information platforms. Check out Vince Kuraitis’ astute discussions in his latest posts and feel free to add your thoughts about the fit of that piece in this big puzzle. The topic is also complicated by credentialing the scientists, protecting patient confidentiality, de-identifying the data, deciding which data to post, possibly getting an IRRB involved, being HIPAA compliant and extending legal protections to well-meaning researchers.

For your consideration. Kaiser didn’t necessary economically benefit on a short term basis from the study by Weng et al, but they got some great press. More importantly, they further established themselves as a public resource that exists to serve the interests of the common man thanks to their extensive data bases. The argument is true for Kaiser and more so for the disease management industry and is a real key to long term success.

i resolve: february in review

It's time to catch you all up on how I've been doing when it comes to my resolutions for 2008.

FAMILY

I have been doing really well in this category (which is, I suppose, why I am starting with it) and I am happy to say that I have done everything to which I committed at least once.

GETTING ORGANIZED

In January, I vowed to begin by cleaning out my food cupboards, fridge and freezers. As I write this, my fridge is full of sludge, the freezers are full of frost and unlabelled food items and my cupboards are so full that stuff falls on my head every time I open a cupboard door.

I have decided to delude myself remain optimistic for one more month, though. So, for March, I resolve to grab a big garbage bag (and some rubber gloves) and get the job done.

HEALTH

I had mixed results in terms of meeting my fitness goals.

I pledged to attend four yoga classes. I made it to two (I was in Florida one week and S. was sick the next). This month, I think I need to shake it up a bit and attend some classes at my local community centre. I will do this at least four times.

I had set myself the goal of walking an average of five one hour walks and one half-hour walk every week. I very nearly made it (S.'s illness and a wicked cold snap caused last week's walks to be abbreviated). In March, I resolve to meet this goal.

The other promise I made was to begin to do some work to build up core strength. I didn't do a single sit-up or abdominal crunch. This month, I'll do it, starting today (I'm attending a cardio-kickboxing class. I imagine this will involve some abdominal torture strengthening).

Update at 7:47 pm: I didn't make it to cardio-kickboxing but I did go for a long and vigorous walk. I think I forgot to keep the 'R' (for 'realistic') in S.M.A.R.T. I did do a few leg lifts and a few crunches, though.

You have to start somewhere.

As for my diet, I have been gradually, and successfully, making small changes. I eat very little sugar, add flax seed to my breakfast cereal and drink green tea almost every day. I have also increased my consumption of veggies and fish.

I have come to terms with the fact though, that now (especially that I will be going for chemo less frequently) is the time to take my commitment to good nutrition a little further and focus in earnest on losing some weight.

My weight has been steadily climbing over the last year and the trip to Florida served as a bit of a wakeup call (very few of my summer clothes fit, the reflection of my ass in the mirror made me wince and my trim and fit in-laws serve as an inspiration). The health risks associated with excessive weight are even higher for a cancer patient and maintaining a healthy weight is one of the best ways to manage lymphedema.

In order to lose weight, I need structure and Weight Watchers has worked very well for me in the past (I lost 48lbs after D. was born and kept most of it off until I started cancer treatment) For me, it's not enough to say "Beer is fattening" but instead, "Beer costs three points that I could spend on food!"

I signed up for the online program this morning (I already go to enough appointments). I figure that telling all my internet peeps (and anyone IRL* who will listen) that I am doing this should have the same effect, in terms of keeping me honest.

I have set several small goals for myself, the first of which is to lose 10 lbs (at a rate of no more than 1-2 lbs per week). I'll keep you posted.

I still owe you all posts on my resolutions (and progress) regarding writing and re-connecting with friends. I will be able to get to those this week, as tomorrow is a chemo day and I will take my laptop to bed with me.

*IRL=in real life.

jeff healey succumbs to cancer at 41

The world lost a major talent yesterday.

This is such sad news (and my heart goes out to his family).

But Jeff Healey lived more in 41 years than some people do in twice that time.

Kaiser Permanente's Lesson for the Disease Management Community

The disease management care blog found this blog posting of an interesting letter from George Halvorson, CEO of Kaiser Permanente. In it, he celebrates Kaiser’s unique information systems that have “all of the data about the provision of care and about the cost of care.” He points out this capability was responsible for important research published in the American Journal of Obstetrics and Gynecology on the association between caffeine consumption and miscarriage. He takes not a small amount of pleasure in noting that the findings of that study were reported in many news outlets worldwide.

According to George (that’s how he signed the letter) just what is it about the Kaiser information systems that make them so special? He gushes that it is its comprehensiveness, thanks to patients getting all their care at Kaiser. This secret sauce contrasts with the “splintered” care in other settings, where patients are unnecessarily victimized by unconnected clinics and hospitals.

So, the ever curious disease management blog went to the published study (hats off to AJOG for making it fully available on-line) to give it a once-over. It turns out the study was not an exercise in culling and correlating extant caffeine and miscarriage data from the user-friendly KP information ether. The authors’ success was the result of hard work, done the old fashioned way, surveying volunteers (with a 43% refusal rate) about their caffeine intake one interview at a time. And yes, while the ready availability of a single clinical data repository aided the researchers, the statistically significant association between caffeine intake and miscarriage:

a) could have also been extracted from a splintered electronic health record and

b) depended not only on the databases and the medical records but on “contacting participants whose outcomes could not be determined by using the previous 2 methods.” Those would be the folks in the Kaiser System getting splintered care.

While it is the nature of health care CEOs to spin, the disease management blog thinks Dr. Halvorson (assuming the letter is completely reproduced) could have mentioned the lead author Xiaoping Weng and colleagues Roxana Odouli and De-Kun Li by name, congratulated them for their hard work and not implied that the information systems yielded up the association after the researchers keystroked Esc-F1.

That being said, George has a point. The study was significantly aided by the Kaiser registries. This has a huge lesson for the disease management community. I believe these companies’ multi-state multi-payor insurance claims and clinical data bases rival Kaiser’s. In fact, they probably exceed it. Toss in their IVR and telephonic-based access to millions of persons and the possibilities become astonishing. The Carl Saganesque access to billions and billions of 1s and 0s make it possible for them to discover hitherto unknown, important and possibly life-saving associations.

Want a small example? At a prior DMAA meeting, the disease management blog sat in on a presentation about the use of disease management data as well as other public information to better identify persons at risk for diabetes. A fascinating finding was the discovery of a strong association between diabetes and ownership of a minivan. Yup, a minivan. It makes sense when you think about it: exclude persons with an age and gender consistent being a soccer mom, and the remainder are older individuals with an abdominal girth that is best accommodated by the height and style of the “captain’s chair” typical of that style of automobile. Is this life saving? While it doesn’t rise to the level of miscarriages, asking patients about the presence of a minivan may be the next best thing if you can’t get BMI or waist circumference data, lead to a strong recommendation to see a doctor and….you get the picture.

The difference is that Weng, Odouli and Li did us a great service by getting their insight into the public domain. In contrast, the relative silence from the disease management companies is deafening. Either that or their work is not getting the attention it deserves.

More on the implications of this tomorrow.

The Disease Management Care Blog Gets an Update!

Hi there. You may think of me as the clever E-Trade Baby, but I’ve been living two lives in the Matrix. In one life, I’m a recreated big-eyed joy-bundle for a respectable stock trading company. I just got a social security number, my parents have yet to pay taxes on my income and am destined, thanks to the obesity epidemic, to collapse of a premature heart attack while helping my landlady carry out her garbage. My other life is lived in computers, where I go by the hacker alias "DirtyDiaprz" and am guilty of virtually every computer crime we have a law for. One of these lives has a future, and one of them does not.

Click. No big deal. There, I just did it. I have hacked the Disease Management Care Blog because the owner-dude jaans is a pathetic internet newbie. I’ve imported some improvements:

• The Blog “Archive” is shorter. The “About Me” is at the top of the page, making the easy-to-remember email address more visible.

• Some persons have unsuccessfully tried to post comments. Google Blog is a free service and I’ve tried to tell the Disease Management Blog that you get what you pay for. If readers have a comment, keep trying but also send an email to the jaans dude. He’ll do his best to help you post it. He may even invite you to write your own post.

• Readers may have had trouble setting up a “feed.” That can be done by scrolling to the bottom of the page and clicking on Subscribe to: Posts (Atom). I’ve tweaked some Webmaster settings that may make it easier. If not, email jaans dude. He may not be able to fix it (he’s not me) but he’d like to know.

• There are many more useful links off to the right. Blogs that are regularly read by jaans (Great Blogs) are listed and may be worth a bookmark or feed. Insurer Coverage Policies links are provided because some readers may be interested in gauging the symmetry between disease management and typical benefit designs. The Disease Management Company DMAA List is a useful portal to many disease management companies’ home web pages. I’ve also listed a lot of the chronic condition guideline links called Guidelines n Measures.

If you think another link should be provided, email jaans.

Whoa