What the Tell-Tale Heart Tells Us About Healthcare

At the end of his short story, Edgar Allen Poe's haunted murderous protagonist lets loose in front of the unsuspecting police officers:

"Villains!" I shrieked, "dissemble no more! I admit the deed! -- tear up the planks! -- here, here! -- it is the beating of his hideous heart!"

It is this story that inspired the title of a paper we published a few years ago on how we could detect the increase (and subsequent decrease) of myocardial infarctions coincident with the rise and fall of the use of Vioxx. This investigation relied solely on the informational byproducts of healthcare delivery. This weekend a Senate report on the risk of Avandia and what was known by GSK came to light. This resonated because we had recently published an article in Diabetes Care about the rapid identification of an increased risk of myocardial infarction with Avandia in patients with diabetes mellitus as compared to other drugs, even drugs in the same class, such as Pioglitazone. Whereas the current headlines are about what the pharmaceutical company knew or dissimulated, there is a broader question that needs addressing: Should every healthcare system not be instrumented so that the clinical leaders of these systems should know whether there are unexpected changes in the risks and health status of their patient populations?

Often, the state of clinical practice is compared unfavorably to the practice of commercial air travel, but what remains underemphasized is that as a system, we are flying blind. There is no local, regional or national air-traffic-controller-equivalent for the healthcare system. Should not the local hospital, and Department of Public Health be the first to know if there is about to be a local health collision or crash? Should not such local surveillance systems run in parallel to regional and national systems? Do we not need multi-level redundancy and open communication to avoid tens of thousands of unnecessary deaths? Further, even as the federal government becomes more aware of the need of such instrumentation, we all expect that our local healthcare systems and health authorities should know of any untoward health trends. Perhaps healthcare systems will start to compete on being able to provide timely and localized health trend data to their customers. Unfortunately right now, the major investments in such health market intelligence is to the payors (i.e. the insurers) who quite reasonably want to know what are the local risks, performance and trends for each of their contracts. Will it take regulation or market competition to make such data extraction and return to patients a matter of course? Let's hope we do not have to wait for a post-mortem Poe'esque orgy of recrimination to find out.

No iTunes-equivalent for Google

Google and the Authors Guild and the Association of American Publishers had hoped to create a one-stop shop for a wide array of published works. The Department of Justice has just ruled that the current proposal does not pass muster. Whether or not this helps or hinders dissemination or scholarship appears to be a matter of some controversy.

Biomedical science is not a game for the young?

The National Institutes of Health have helpfully posted summary information about their funding patterns. It is much more revealing of the training patterns and mentoring of young investigators at our academic centers than any specific NIH policy. It is evident that whatever your terminal degree, your age at first R01 is 42-44, a full 10 years older than the age of first R01 in 1970. PhD's only are 2 years younger on average than MD's and MD-PhD's are remarkably no older than the MD's (which was not the case in 1970). What does this say about the capability of our research workforce to be energetically innovative? Are we drawing from the right pool of investigators or is there something fundamentally wrong in the institutionalized career path leading to an R01?

Who are the right practictioners of medicine?

This report from Haiti is a reminder that doctors are not always the answer to a healthcare need. We might be well-served by a national discussion of what are the properties of healthcare practitioners that we believe we are seeking to maximize and whether these are well matched to our needs as a society and as patients. It is a discussion which will also inform budgets.

Positive Peer Pressure

Can we use Internet-borne viral messages to counter biological viruses? Our very own Ben Reis is recognized by HHS Secretary Kathleen Sebelius for his Facebook application:

The “I’m a Flu Fighter” Facebook application takes users through four steps. In the first step, “Choose My Character,” users choose between a superhero, a doctor, a virus behind bars, or a cartoon syringe to represent themselves as a flu fighter. Then, users set their status by sharing whether they got the flu vaccine or plan to, and how it was (Could be better, Fine, Good, Great!). Next, users can send invites to their friends challenging them to get vaccinated. Lastly, users are taken to a page with resources about flu such as the flu vaccine locater. The visibility of users’ information as Flu Fighters is controlled by users through their privacy settings.

When is obesity as infectious as tuberculosis (or even more)?

As part of our Notable Books series, Nicholas Christakis will be reviewing the interesting relationship between our social networks and disease burden (and related phenomena). This is in context of his recently published book:Connected: The Surprising Power of Our Social Networks and How They Shape Our Lives. Time: December 10th, 4pm. Place: Countway Library of Medicine, 5th floor, Ballard auditorium.

Open Source Changing Medicine

Just as Open Access is a threat to an unsustainable publishing model, so it seems are open source medical applications to the most of the closed-source offerings of the for-profit sector. In conjunction with the development of substitutable platforms, there is a new and widening opportunity for independent developers to innovate and disseminate their solutions and to let a larger and more diverse ecosystem of solutions to be adopted. What is most promising in this regard is the growing acceptance of open source solutions for implementation

Addendum: It's rewarding to see our efforts listed here as among the top 10 open source software projects changing medicine (i2b2 and indivohealth).

Normality, expertise and fairness.

Who is more knowledgeable? The physician who remembers more diagnostic tests than any other physician or the physician who is the quickest and most savvy at online searching for the relevant tests? Who is the most technically expert surgeon? The one who has the most nimble fingers and the sharpest eyes or the one who can make herself most comfortable with robotically assisted micromanipulators? This story taken from athletics suggests that we are going to be uncomfortable with some of the answers to these questions for many years to come.

Screening to distraction: Greater focus on the incidentalome

Last week, Gina Kolata of the New York Times summarized a growing controversy around the value of some of the types of medical screening tests currently employed.The salutory effect of this and related articles is a growing awareness of the tradeoff between increased sensitivity and specificity. It also is a shot across the bow as we contemplate the growth in the number of incidental findings that are going to occur as we test hundreds if not thousands of genetic variants today and in the future. Also, today, Gina Kolata reviewed how little we know about diseases as extensively studied as cancer. Some of them do disappear. Do these spontaneously regressed tumors contribute to the surprisingly high false positive rates for screening?

A physician of distinction: Oliver Wendell Holmes

An invitation to celebrate the life, the accomplishments, and the continuing relevance of the literary and scientific contributions of Dr. Oliver Wendell Holmes.

Oliver Wendell Holmes (1809–1894) spent parts of the nineteenth century as America’s best-known physician and best-selling author. Sir William Osler praised him as “the most successful combination which the world has ever seen, of the physician and man of letters.” Henry James, Sr., called him “intellectually the most alive man I ever knew.” Today, he is remembered as a physician for his investigation of the contagiousness of puerperal fever (two decades before the advent of the germ theory), his advocacy for therapeutic skepticism and rationalism, and for coining such terms as “anesthesia.” He is celebrated as a literary and cultural figure for such poems as “Old Ironsides” (considered responsible for saving the U.S.S. Constitution), for his early forays into what would be considered a new depth psychology, and for terming Boston the “Hub of the solar system” and describing its “Brahmin” caste.

Join us to help celebrate the life, the accomplishments, and the continuing relevance of the literary and scientific contributions of Dr. Oliver Wendell Holmes.

Dr. Oliver Wendell Holmes and the Spirit of Skepticism:

November 17, 2009, 1:00 PM- 5:00 PM, reception 5:00-6:30

Location: Countway Library, 10 Shattuck St., Boston

You could be an information spigot

Even if you are not an information altruist, there are those who would like to just plug you in and take it from there.

Hat tip: Ken Mandl

Where is the consumer in healthcare?

Prof. Regina Herzlinger, with the Harvard Business School, will be teaching a free intensive seminar course, Innovations in Consumer-Driven Health Care, in January 2010. This is a one week class, beginning on 1/11/10 and ending on 1/15/10.

She welcomes students from the various Harvard and MIT graduate schools as well as both undergraduate universities to submit their resumes to her for consideration if they wish to enroll . These can be to jlopez@hbs.edu. The class itself will be held on the Harvard Business School campus and will likely run from 9.00am until 3.30pm with a lunch period from 11.30am-1.00pm. Students chosen to take part in this class will be notified in November.

Innovations in Consumer-Driven Health Care

Monday, January 11-Friday, January 15; 9-11:30am and 1-3:30pm
Aldrich 211

Career Focus

Health care industry

Educational Objectives

This seminar will focus on the creation of innovations in health care that
better meet consumer needs.

Content and Organization

In the first two sessions on day one, students will examine three different
national models for achieving universal coverage:

*   Consumer-driven health care in Switzerland, in which consumers use their
own funds to purchase insurance
*   Single payer health care in the UK, in which the government controls the
health care system
*   Managed competition system in the Netherlands, in which the government
creates a national health care market

On day two, the second two sessions will delineate the entrepreneurial
opportunities and obstacles created by a consumer-driven health care system.

On days three, four, and five, students will discuss case studies of
entrepreneurial, consumer-driven ventures in the following fields:

*   Health insurance - innovative efforts that support health promotion and
reward efficiency (two cases)
*   Health services - focused, integrated care for chronic diseases; specialty
hospitals; retail health care outlets; medical travel (four cases)
*   Personalized diagnostics tests for mutated genes; companies that offer
genetic maps (two cases)
*   Personalized medical devices - Proteous; Chronicle (two cases)
*   Personalized drugs (one case)
*   Personalized information (one case)

Not so knotty genomes

Erez Lieberman, of the HST Bioinformatics and Integrative Genomics program has just published a provocative paper which uses moderate resolution mapping (1 megabase) of the 3 dimensional structure of the genome. The results are consistent with prior work suggesting that DNA maintains its function by packaging itself into a structure that is free of knots. Now, if I could only apply this to my collection of wires in my drawer.

Information Technology is Central to the Conduct of Medicine

Medicine always was a discipline of information processing. We took data (signs and symptoms) from the patient, matched them against our knowledge-base (the hopefully updated residue of medical school) and then came up with a interwoven diagnostic and therapeutic plan. We then understood that this information processing could be automated. But then, there were no electronic medical record systems that could truly provide the data that such automation required. Decades later, the federal government is trying to make a concerted push into this arena, one that explicitly includes the patient (us) as an active participant in this information processing enterprise. Yesterday, we wrapped up an interesting meeting attended by representatives of the government, academia, and industry to address some specific opportunities to catalyze successful deployment.

Regulating Curators?

This article suggests that a new bill in introduced in California may regulate how the modern curators and interpreters of biomedical data (bioinformaticians) may end up being regulated and tarred by the same brush as direct-to-consumer genetics testing companies.

“This law doesn’t just cover companies, it covers what’s done in academic institutions, too,” Butte said. “Nothing in this bill blocks that.”

More evidence, in any case, of the centrality of information processing to the biomedical enterprise.

Never Ending STories

In preparation for a conference on substitutable platforms in health IT, I was directed to an instance of a growing form of self-publication that we call the Never Ending STory (NEST). This instance of NEST is the knol which has become an increasingly popular venue for publications including ones that look a lot like standard peer reviewed journals. More generally, a NEST starts as an embryonic paper. With iteration and with the help of co-author and reader suggestions, it incubates a mature manuscript. Unlike a blog, it is not just a snapshot of a narrative perspective in a sequence of snapshots, but a single integrated document. Unlike a wikipedia article it does not claim encyclopedic authoritativeness (or at least sole authoritativeness so that disagreeing contributors have to battle it out) but only the moderated perspective of the authors. Unlike a standard peer review article, it's publication does not signify the end of its incubation and the hatching of a fully mature narrative. And it is timely and time efficient to make NEST's more prevalent. How often, have you read a scientific article from five years ago and wondered if more recent developments had influenced the authors' perspective on their prior results and/or conclusions? Would it not be more effective to allow the author to update their articles (while maintaining an archival history of all prior versions) so that they continue to be current? Or if there were additional data that bolstered the case of the original article, the author could add these data to that article without having to go through an entire process of a new publication just for the incremental data. That would reduce unnecessary publication noise and increase the value of the article to the reader.

Although, right now, we are using the knol as the infrastructure for our NESTs, we can hope that academic publishers will provide vehicles of similar functionality. Until, then we will just have to incubate our own.

Once we have electronic medical records implemented, what then?

We, as nation, are in the process of investing several billion dollars into the implementation of electronic health records. If all goes well, there will be a lot of individual data buried in these care systems. This begs the question of what utility, if any, this data has for research whether for genomics, comparative effectiveness research, pharmacovigilance, or public health. The NIH is hosting a conference at the end of October (entitled “Widening the Use of Electronic Health Record Data for Research”) to attempt to answer the question. All are interested parties are invited.

Evolution of Evolution

In a mashup of bioinformatics methods and historical scholarship Ben Fry provides an artistic rendering of the evolution of Darwin's work. Watch it evolve for a few minutes.

Hat tip: Ben Adida

The Least Publishable Unit

This might explain why we have so many journals too.

Hat tip: Ben Adida

What are medical libraries expected to do?

This is not an abstract question about the future of libraries, although that is also an interesting question. It is a question about what the medical school accrediting organizations have determined. "The Liaison Committee on Medical Education (LCME) is the nationally recognized accrediting authority for medical education programs leading to the M.D. degree in U.S. and Canadian medical schools. The LCME is sponsored by the Association of American Medical Colleges and the American Medical Association." and this is what they had to say (the bold face is mine for emphasis):

D. Information Resources and Library Services
ER-11 The medical school must have access to well-maintained library and information facilities,
sufficient in size, breadth of holdings, and information technology to support its education and
other missions.

There should be physical or electronic access to leading biomedical, clinical, and
other relevant periodicals, the current numbers of which should be readily
available. The library and other learning resource centers must be equipped to
allow students to access information electronically, as well as to use self-instructional
materials.

ER-12 The library and information services staff must be responsive to the needs of the faculty, residents
and students of the medical school.

A professional staff should supervise the library and information services, and
provide training in information management skills. The library and information
services staff should be familiar with current regional and national information
resources and data systems, and with contemporary information technology.
[Revised annotation approved by the LCME in October 2007 and effective immediately.]
Both school officials and library/information services staff should facilitate access
of faculty, residents, and medical students to information resources, addressing
their needs for information during extended hours and at dispersed sites.

(This is taken from:
http://www.lcme.org/functions2008jun.pdf found at:http://www.lcme.org/standard.htm
Hat tip David Osterbur.)

These are important recommendations and ones which foreshadow trends from the very near future. We have embraced this educational mission from access of electronic resources to teaching biomedical researchers how to perform bioinformatics-enabled research (see the bioinformatics nanocourses offered to all by Reddy Galli— details here ). The central question is whether librarian training will embrace the information technology that will be required to keep libraries current and relevant to their patrons. The answer to that question will determine where the future librarians are trained and that will in turn determine how central libraries remain to the academic mission.