May 16, 2006
WEB 2.0: NIH looking for info on Wikis
THIS JUST IN: NIH issues RFI asking for info on wikis (posted 5/8/2006).
I don't have time to look into this or comment on it at this point, but a quick glance found this:
3.b. Date of product’s first production release (v1.0, not beta versions)
Guess they haven't quite figured out what the Web 2.0 philosophy of "always in beta" means... ;-)
Originally posted by Hunscher in FutureHIT, May 16, 2006 at 07:07 AM | Comments (0)
Is Free Text an endangered species in Health IT?
There is a movement afoot in the health IT world to standardize as much as possible. I recently heard a complaint from a research IT developer about the ongoing use of free text entry of data like patient history and pathology annotations, which is still very common in medicine. The use of standardized encodings makes possible machine-machine communication with semantic accuracy, and also is the key to AI-like applications that could allow clinical informatics to achieve the kind of quantum leap in computability that has recently occurred in the so-called bench sicences like genomics and proteomics.
This is a compelling argument. It is also wrong. Worse than that, it's dangerous.
I say this as a programmer who studied expert systems in the 1980's, helped build them in the early '90's, and has worked to embed intelligence in every system I could ever since. I am currently actively working on the information architecture aspects of a system that depends heavily on SNOMED and LOINC, have actually contributed dontent to LOINC, and have proposed a poster for AMIA 2006 that addresses the topic of how to convert complex natural-language expressions into HL7v3 Observations elements using LOINC and SNOMED as well as the semantics embodied in the HL7 information model.
I am not against standard terminologies, taxonomies and ontologies. What I believe to be wrong and dangerous about the argument is the idea that free text per se is bad.
I wrote most of this on my flight back to Detroit from San Francisco where I attended the Second Annual Velos eResearch User Conference. eResearch is the clinical research data management system we have deployed, but we have an IRB workflow management system from Click Commerce which was given the name eResearch by our IRB folks, so we call the product Velos. For a variety of implausible reasons, given the wealth of SF and its proximity to Silicon Valley, I had very little access to the Internet during my stay. Hilton charges for Internet access (not that it's my money, it's the principle of the thing), as do Starbucks' T-Mobile access points (objecting on the basis that this is both my money and the principle of free access is being violated). I'm not sure I totally agree with Richard Stallman's idea that "software should be free, like air", but I believe the Web is in the category of things that should be "free, like air". Apologies to Stallman if I am misquoting him, but - I had no Internet access up there, so I can't use Google to find the original!
The diatribe against free text came from a very intelligent person whose identity is unknown to me, because due to seating angles I couldn't see who he was, but his argument was cogent and well thought out. There is no question about his being right in the realm of IT, standard encodings make a difficult job easier, but to eliminate free text in the areas he mentioned would be wrong and dangerous from both cultural and medical perspectives.
Consider an entry in a patient chart like the following:
Patient believes has "the sugar" because she gets light-headed when she stands up and is "wiped out" during a lot during most of her day, especially after meals. Spouse reported confidentially that he suspects she is self-administering "Robitussin" by which he means a cough suppressant containing codeine. Spouse was unsure of actual brand or amount being taken; will observe more carefully and is to report by phone before her next visit. (Possible projection- spouse appearance consistent with CNS depressant abuse.) Dx of depression equivocal. DM2 possible but insulin levels tested normal during examination. Patient refuses to self-test due to cost of supplies (self-insured). Similarly refused to schedule next visit; spouse to encourage.
There is a vast amount of information here even to we who are outside the imaginary situation, but in real life the clinic staff may derive even more due to their knowledge of context, including prior medical history of patient and family, cultural norms, fear of skin puncture previously expressed by the patient, family financial and emotiuonal stability, and so on. Encoding many of these data may eventually be possible, but not necessarily in our lifetimes, but meaning is not static or atomic. In human communication, meaning is negotiated and high degrees of ambiguity are tolerated. The right thing is often done for the wrong reasons (i.e. in the absence of sufficient evidence) and vice versa. Human negotiation of meaning is fluid and continuous in a way that may never be possible to duplicate in machine "intelligence".
Where I would argue we need to devote our energies would be to machine understanding and encoding of what factual knowledge can be gleaned from the free text, but without discarding the free text, and with the encoded facts clearly marked as machine interpretation. Computer interpretation of EKGs is routine, and more coverage both in breadth and depth is both possible and desirable. But please, speaking as a patient and child- and eldercare giver, don't lose the free text. Interpersonal communication is the best and cheapest form of intelligence we've got right now.
Originally posted by Hunscher in FutureHIT, May 16, 2006 at 06:22 AM | Comments (0)
EMR: How likely?
I often wonder if we will ever have a real electronic record (EMR) in the USA. I get pessimistic for a number of reassons, three of which I mention here. One reason is the Prisoner's Dilemma problem. Although there is a clear case for a universal EMR benefiting the public health, the benefit to those who must define, construct and maintain it is far from clear. Likewise, an EMR will involve expenditures by the implementers, expenditures of a magnitude as yet undefined.
A second concern has to do with the need to convert data from legacy systems and the cornucopia of headaches that will ensue as we try to convert. In addition to the costs and the difficulty of conversion, there is the risk of losing data. When businesses convert computer systems and lose data, dollars can be lost; when heatlhcare convert systems and lose data during conversion, lives can be lost. Most of us still value lives over dollars.
The difficulties in conversion stem from the indeterminate complexity of the problem domain. If you enjoy reading things I write in this blog, you most likely don't need to be told how complex the underlying data of biomedical research is. You already know there is no final answer to that question. Does biomedical research include biology? It seems logical, but if so, where does it stop in that domain? The same questions can be asked of every science except astronomy, mathematics, and geology. Biomedical research includes but is not limited to parts of physics, chemistry, psychology, sociology, and anthropology.
Further complicating the picture, data from human subjects are subject to an intricate web of regulations that differ from country to country and from context to context. Here in the USA, the HIPAA Security and Privacy Rules apply to any identifiable data; the so-called Common Rule for human subjects protection applies in all cases; the FDA Good Clinical Practice predicate rule applies in FDA-regulated clinical trials. Federal and state legislation like that arising from the stem cell controversy may apply. (GCP) and other Predicate Rules apply to data captured for FDA-monitored clinical trials. Institutional review boards (IRBs) can apply rules specific to the institution, which may include what amount to local customs but are largely driven by the applicable informed consent documents. These are often done study-by-study and are natural-language documents that include terminology with both legal and clinical implications.
If this is not enough complexity for you, add to these the whims of the sponsor, investigator, and biostatistician, who all have ideas of their own about what data must be captured and how they should be validated. And all this is before we even get close to the real problem, which is semantics. When humans communicate, they negotiate meaning; I say specimen, you hear biosample, if that is your term for some biological substance - tissue, serum, or whatever - obtained from a human or other carbon-based life form. When a computer says specimen, another computer hears specimen, and neither computer has any idea what the word means, so if there is no translation mechanism in place in which a human has associated the term specimen when used by computer system A with the term biosample within computer system B.
The problem is further complicated by the issue of granularity. Suppose computer system A has a data element called gender that uses the value M for male, F for female, U for unknown, and R for refused to answer. The field is required. Suppose computer system B has a field called sex that uses 0 for male, 1 for female, 2 for unknown, and 3 for refused to answer. The field is required. No problem translating: gender=sex, M=0, F=1, etc. But what if the field is not required in system A, and the absence of the value means (we must assume) that the field was inadvertently skipped? Should system B assume the value is unknown, or the respondent refused to answer? The correct answer is that in either case, you lose information going from A to B.
Now, starting with the orginal metadata for the two systems, suppose system A has a value H that means hermaphrodite, a value S that means gender reassignment by surgery - male to female, and a value T that means gender reassignment by surgery - female to male. Moving data from system B to system A is easy - 0=M, 1=F, 2=U, 3=R - but moving data from A to B is essentially impossible. What is the corresponding value for S? Is a surgically transgendered person his or her original gender, or his or her current gender? The correct answer is, of course, "it depends on the context". Genetically speaking, the Y chromosome is still there, but in a mental health context, the person's voluntary feminization is a vital part of the picture that needs to be recognized and addressed. Even adding new values to system B's domain for this data point does not necessarily help. All that will do is break system B unless it is modified to take the new values into account.
This may seem like a made-up scenario, and it is, but the problem is not. A great many standard vocabularies define gender; of these few have the same level of granularity. In fewer cases still is there agreement on eitherr the names or the encoding values even when the semantic granularity is the same.
An EMR will need to standardize a very large number of common data elements. The semantic problems I have described are not unique to gender. The standards process will go on for a long time, and per ONCHIT's official stance, the definition is expected to result in a certification process for EMRs. This process will act as a concrete requirements specification for conversion of legacy system, which will then lead to cost estimates.
Here, I would predict, the process will break down. Who will fund the conversion? Given the pace of scientific advances occurring around us, which is breathtakingly rapid and accelerating, who will maintain the EMR, and how? Will those who pay for it benefit from it, and if not, who will compel the required parties to fulfill an unfunded mandate?
In my darkest hours I wonder if this is simply some sort of dodge invented by people who will profit from the attempt - the contracts involved in setting all this up have been, are, and will be quite lucrative. Then I wonder how I can get in on the bidding.
My third concern is the dilution of effort through well-intended but doomed universal standards efforts. HL7 version 3 is one example; caBIG is another. I am old enough to remember the long, slow slide into irrelevance of the Esperanto language and the Technocracy movement, both of which proposed to replace near-chaotic systems of human communication and governance with rational, global replacements.
A better use of EMR funding would be on creating truly intelligent interchange systems that could negotiate meaning between local or regional EMRs. To the extent these EMRs leverage existing standards, the interchange system's job would be made easier, its crucial task would be to navigate ambiguous information and the need tomake decisions based on partial and imperfect knoweldge in a manner that emulates how humans handle them. The irrational, near-chaotic nature of human communication and governance won't go away in our lifetimes. Neither should it, necessarily; there is a lot to be said for intuition and creative guesswork. Maybe I'll get time to write about that soon, but for now I gotta go.
Originally posted by Hunscher in FutureHIT, May 16, 2006 at 06:22 AM | Comments (0)
Beach Photography
I figure that things I see are often Things I've Noticed, so I thought I'd occasionally share some photographs as I take them. This is from a beach in Western Michigan. +...25% Humor, 25% Philosophy, 25% Sociology, 25% Politics, oh and I am a car fanatic
Originally in Things I've Noticed, May 16, 2006 at 02:22 AM | Comments (0)
May 15, 2006
links for 2006-05-15
Originally posted by dhamdhere in Aashish's Blog, May 15, 2006 at 02:52 PM | Comments (0)
May 14, 2006
links for 2006-05-14
Originally posted by dhamdhere in Aashish's Blog, May 14, 2006 at 02:52 PM | Comments (0)
May 13, 2006
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Originally posted by dhamdhere in Aashish's Blog, May 13, 2006 at 02:37 PM | Comments (0)
High Gas Prices? Use Less Gas.
As if the world doesn't think we're a nation of whiners already, here we are complaining about gas prices which are among the lowest in the world, particularly when compared to our incomes. According...25% Humor, 25% Philosophy, 25% Sociology, 25% Politics, oh and I am a car fanatic
Originally in Things I've Noticed, May 13, 2006 at 12:37 AM | Comments (0)
May 12, 2006
links for 2006-05-12
Originally posted by dhamdhere in Aashish's Blog, May 12, 2006 at 02:37 PM | Comments (0)
May 11, 2006
[no title]
Over at Chasing Vincenzo, RW is finally saying what needed to be said for this week's Roundtable post. He tackles a nagging scourge of society... the tassled shoe. They're outdated, ugly, get uglier...25% Humor, 25% Philosophy, 25% Sociology, 25% Politics, oh and I am a car fanatic
Originally in Things I've Noticed, May 11, 2006 at 01:07 PM | Comments (0)
Quick Quote
It's easier to criticize than it is to create. + Atul...25% Humor, 25% Philosophy, 25% Sociology, 25% Politics, oh and I am a car fanatic
Originally in Things I've Noticed, May 11, 2006 at 01:52 AM | Comments (0)
May 10, 2006
We have met the enemy, and he is Us (and Them, too): Biomedical Research and the enemies of the public health
It's been a month now since we finished our application for the CTSA (Clinical Translational Science Award). This is the big grant that will replace the General Clinical Research Centers and the various clinical research training programs with a unified "home" for clinical research within academic health centers such as ours. This is the culmination (at least with respect to clinical research) of NIH Director Elias Zerhouni's Roadmap initiative, which has been a grand attempt to restructure NIH medical research funding efforts in a way that more directly benefits the public health. Everyone at our institution was under a vow of silence until the application was out the door. Now that the ban has been lifted, I can talk more freely about translational research from the eclectic perspectives of an IT professional, former social worker, cop and logger, and lifelong observer of the human condition.
It seems a bit specious to imply, as I did above, that the revolution in systems biology, genomics, and proteomics is not to the benefit of the public health. Although there are huge amounts of work yet to be done, the discoveries already made make clear that solutions for many if not most of the diseases and disorders that plague us now are within reach. The objective of translational research is to take these discoveries through the "last mile" between the lab benches of academia and the exam table in the community clinic.
A great effort lies ahead of us, and it seems like a good time to take stock of the barriers that stand in our way. The technical barriers, whether they relate to physical or information structures and functions, are clearly surmountable. Anyone who has lived through the past thirty years and can remember a time before ubiquitous computing and "smart everythings" can no longer doubt that engineers can come up with a gadget that can do just about anything. So what stands in our way of perfect health? I see two sources of obstacles: "Them" and "Us".
There are a lot of Them, some malignant from the git-go, and others who are essentially benign but whose actions are fraught with unintended consequences. Among the malignant there are advertisers and Republicans, and some who are both (TV evangelists come to mind). Advertisers are focused on selling us things without concern for our health - tobacco has been the whipping-boy of this group, but Big Tobacco has a lot of Big Friends, like the fast-food and theme restaurant franchises and at an earlier point in the supply chain, purveyors of high-fructose corn syrup. All these folks are squarely aimed at making and keeping us morbidly obese, with no little success. I would include the pharmas too, because not every ailment can or should be treated with a drug or device, and anything outside this category fails to get mention from their lavishly funded sales reps.
Republicans used to be a fairly benign group. I was a Goldwater Republican back in my high school days, when conservatism meant trusting in the creativity and initiative of individual human beings free to choose and act on their own, rather than a faceless Big Brother-style government that placed security over liberty, invaded its citizens' privacy at will, and spent vast amounts of hard-earned taxpayer dollars on ventures that benefited few and harmed many. Big Brother was then believed to be the end goal of the Democrats, but is a nice summary of the attitudes and policies of the current administration, which is the culmination of a takeover of the Republican Party by a coalition of fundamentalist yahoos and multinational corporate profiteers. This satanic alliance makes Barry Goldwater look like Bill Clinton.
The Republicans' policies impact the public health in two ways: they have reduced available funds for research at a time when research dollars have the greatest potential ROI in history, and they have politicized science at many levels, subordinating objectivity to administration policy.
Enough about the malignant: what about the well-intentioned folks whose actions nonetheless get in the way of advancing the public health? I include here many who know about the consequences of their actions, but are constrained by the system within which they work. Overworked and underpaid primary care providers are a good example. They lack the time and energy to do the best job they know they could do, because of the fragmentation of the healthcare system and difficulties in learning about evolving best practices. The publish-or-perish attitude prevalent in academic health centers makes researchers overly protective of their data and their subject pool, and their project-by-project funding makes it difficult for them to fund the information technology infrastructure that would make their investigation more efficient and fruitful. This latter systemic issue is complicated by a kind of dogged ignorance among some researchers regarding the knowledge and effort involved in the creation of research informatics.
On to the obstacles created by Us, the "public" in the term "public health". In the Bhagavad Gita, Krishna says something along the lines of the following: "Though he is surrounded by death on all sides, no man truly believes that he himself will die." If we choose to overeat, spend our days watching TV rather than getting fresh air and exercise, smoke too much, or drive too fast, the advances in science are wasted. If we vote into office a coalition of fundamentalist yahoos and multinational corporate profiteers, we get a faceless Big Brother-style government that places security over liberty, invades its citizens' privacy at will, and spends vast amounts of our hard-earned taxpayer on ventures that benefited few and harmed many. If we allow the environment to go to hell out of apathy, we (and worse, our children and the generations to come) live with the consequences.
Originally posted by Hunscher in FutureHIT, May 10, 2006 at 04:22 PM | Comments (0)
links for 2006-05-10
Originally posted by dhamdhere in Aashish's Blog, May 10, 2006 at 02:52 PM | Comments (0)
Hack Attack: Automatically download your favorite TV shows - Lifehacker
This is a great article that talks about how to use a bittorrent client to automatically schedule downloads of your favorite TV shows as their torrents show up. I have not tried out this hack yet but plan on doing so ASAP.
Link: Hack Attack: Automatically download your favorite TV shows - Lifehacker.
Originally posted by anant in Anant's WebLog, May 10, 2006 at 01:22 PM | Comments (0)
How Far This Blog Has Come!
I took the University of Michigan Business Information Technology 742 class Blogging Bootcamp partially out of interest and partially because it fit into my schedule well. Our professor, Bud Gibson...25% Humor, 25% Philosophy, 25% Sociology, 25% Politics, oh and I am a car fanatic
Originally in Things I've Noticed, May 10, 2006 at 01:22 AM | Comments (0)
May 08, 2006
Phrases That Should Be Banned, (Usually Spoken by People That Aren't Funny)
As a person who likes to write, I continually try to devise new quotes, but in my daily life, I overhear many people say things that are so cliche. These expression should be banned because they're...25% Humor, 25% Philosophy, 25% Sociology, 25% Politics, oh and I am a car fanatic
Originally in Things I've Noticed, May 8, 2006 at 07:22 PM | Comments (0)
links for 2006-05-08
Originally posted by dhamdhere in Aashish's Blog, May 8, 2006 at 02:22 PM | Comments (0)
May 07, 2006
The Healthcare IT Guy - Technology Support for Evidence-based Medicine
Reading this post on Technology Support for Evidence-based Medicine, I began to wonder if EBM isn't sometimes overblown - mostly by folks trying to point out its limitations. The way I see it, the EBM movement isn't about using artificial intelligence to get the perfect answer to every question in every situation. It's about getting all relevant facts in front of the clinician at the point of care and then trusting her to use her own judgment as to how the facts apply to the situation at hand.
If we look at EBM as an attempt to raise the quality of patient care, the first thing we need to recall is that the bar is pretty low. A recent report from an authoritative source has shown that regardless of disease, demographics, or economic stratum, the probability is roughly equivalent to a coin toss as to whether the patient is going to get the right care in any given situation. If we could up that to two out of every three times on average, it would be a huge win, given the number of clinical encounters that occur every minute of every day.
Problems with implementing best practices have less to do with physician ignorance and more to do with systemic problems like fragmented record-keeping and lack of time to prep for encounters. A 15- to 30-second reading of the chart outside the exam room door is par for the course. As a result there is a strong tendency to focus on presenting signs and symptoms and patient report of the reason for the encounter. What gets lost in the shuffle are often the long-term threads in the patient's care.
A 450-pound diabetic in the clinic for urgent care for a gangrenous right foot will get the best advice possible as to handling his diabetes, but what about the patient who is only mildly overweight and is in for a sinus infection? Will she be asked about her adherence to her diabetes medication regimen, and reminded to keep a close eye on her extremities and get a vision exam sometime in the next month? If the family practitioner has 600 active patients and is working a 55-hour week plus on-call hours, the answer may be no, even though given the right knowledge at the right time, best practices in this case are a no-brainer.
An EHR accessible at patient bedside with the same or less effort as looking at the hard-copy chart would be a huge step in the direction of EBM. If the EHR could also point out the things that obviously need to be asked and said given comprehensive knowledge of this patient's condition, what a breath of fresh air that would be.
Once we have a workable real-time-accessible EHR at all at bedside or in the exam room, we can look at the order-of-magnitude increases in quality that could come from linking EHRs together. If a patient should be running out of her meds every 30 days but is refilling her scripts ever 40 days, there is a problem with therapy compliance, a problem that could be easily identified if the clinic and pharmacy records are linked.
Bormel refers to a 2004 New Yorker article from a while back that talks about the difference between good treatment and great treatment in multiple sclerosis. it comes down to focus, aggressiveness, and inventiveness. In the context of MS this meant not just knowing what the guidelines were for best practices, it meant total clarity about whether or not the advice was being followed by the patient and dogged insistence on sticking to the regimen. This is a low-tech solution that requires a commitment to excellence on the part of the clinician and some very achievable information technology support. What was advised? How well has advice been followed in the past? What kinds of incentives and exhortations have been tried, which have worked and which didn't, and to the best of our knowledge, why or why not?
The volume and quality of "evidence" in medicine is burgeoning, and controversies are as abundant as ever if not more so, but until we get the basics in place, it seems to me there's a lot of room for achievement before we get to the bleeding edge.
Originally posted by Hunscher in FutureHIT, May 7, 2006 at 06:07 PM | Comments (0)
links for 2006-05-07
Originally posted by dhamdhere in Aashish's Blog, May 7, 2006 at 02:22 PM | Comments (0)
May 06, 2006
links for 2006-05-06
Originally posted by dhamdhere in Aashish's Blog, May 6, 2006 at 02:37 PM | Comments (0)
Special Update: Cleveland Cavaliers win the 1st round NBA play-off series against the Washington Wizards
That was just an unbelievable play-off series, probably the best I've seen. Three one point games, two overtime games... The best part is how they just clamped down on defense and won it with a last...25% Humor, 25% Philosophy, 25% Sociology, 25% Politics, oh and I am a car fanatic
Originally in Things I've Noticed, May 6, 2006 at 12:37 AM | Comments (0)
May 05, 2006
Quick Quote On Math
In our society, math is important because money is important. + Atul...25% Humor, 25% Philosophy, 25% Sociology, 25% Politics, oh and I am a car fanatic
Originally in Things I've Noticed, May 5, 2006 at 08:37 PM | Comments (0)
links for 2006-05-05
Originally posted by dhamdhere in Aashish's Blog, May 5, 2006 at 02:37 PM | Comments (0)
May 04, 2006
links for 2006-05-04
Originally posted by dhamdhere in Aashish's Blog, May 4, 2006 at 02:22 PM | Comments (0)
How Will Others Treat You When You Become Famous?
Steph, one of the newer Roundtablers at her blog Incurable Insomniac is up this week and she talks about how she is being treated by people who know her now that she has become somewhat famous with...25% Humor, 25% Philosophy, 25% Sociology, 25% Politics, oh and I am a car fanatic
Originally in Things I've Noticed, May 4, 2006 at 11:52 AM | Comments (0)
The "Which Seat Do I Choose?" on The Bus Dilemma
I live in the Detroit area, so getting onto any mode of shared public transportaion is a rarity. But when I used to work at a large office complex and we had to be shuttled to our main building...25% Humor, 25% Philosophy, 25% Sociology, 25% Politics, oh and I am a car fanatic
Originally in Things I've Noticed, May 4, 2006 at 02:07 AM | Comments (0)
May 03, 2006
links for 2006-05-03
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An interesting argument on how Wal-Mart is actually good for some mom and pop stores.
Originally posted by dhamdhere in Aashish's Blog, May 3, 2006 at 02:22 PM | Comments (0)
May 02, 2006
links for 2006-05-02
Originally posted by dhamdhere in Aashish's Blog, May 2, 2006 at 02:22 PM | Comments (0)
Quick Quote
I'm a part-time psychic. I only work when I'm right. + Atul...25% Humor, 25% Philosophy, 25% Sociology, 25% Politics, oh and I am a car fanatic
Originally in Things I've Noticed, May 2, 2006 at 02:37 AM | Comments (0)
Links for 2006-05-01 [del.icio.us]
Originally in Things I've Noticed, May 2, 2006 at 01:07 AM | Comments (0)
May 01, 2006
links for 2006-05-01
Originally posted by dhamdhere in Aashish's Blog, May 1, 2006 at 02:52 PM | Comments (0)