Making the mark with markup

A very informative interview with our very own Ben Adida by Yahoo! regarding RDFa. This is a format that will allow very lightweight incorporation of structured data within web pages that will allow the kinds of interoperable applications we are developing at the Harvard Catalyst far easier to build and disseminate.

Can we afford NOT to invest in basic research?

With thanks to Ted Shortliffe who pointed out this article by Bill Buxton. Bill makes an interesting argument in favor of basic research which in many ways runs counter to trends in federal and corporate funding.

Foundations of Policy

"Twenty-first century leaders in medicine and government are confronted by questions of enormous magnitude: What are the determinants of disease and its distribution?  How should health outcomes be measured? How are we to optimize health care delivery and financing, and how are we to ensure access to the fruits of medical science to the poor of this country and the developing world? However, such twenty-first century dilemmas are not new."

The Center of the History of Medicine of the Countway Library has been growing under the leadership of Scott Podolsky and Kathryn Baker Hammond and most recently they were awarded a grant from the Andrew Mellon Foundation that will enable, for the first time, research in the manuscript collections of four influential leaders in public health: Leona Baumgartner, Alan Macy Butler, Howard Hiatt, and David Rutstein. This adds to the growing list of new initiatives by the Center, An important step towards understanding the current and future challenges in public health.

Can we understand genetics? Can you help?

In the context of the multitudinous business plans of various direct-to-consumer genomics companies, any informed analyst should wonder: Can we (healthcare consumers) understand the information communicated by the long-promised, now available, large personalized genomic data sets? This in the context of much evidence that doctors cannot correctly interpret genetic tests and can be readily influenced by genetic testing companies.

With funding from the NIH, we are trying to study how to have patients manage, control and understand their own genomic data. There are several ways you can help but perhaps most importantly it is those who have had experience as consumers of genetics counseling who could help by serving as study subjects to determine what works and what does not in web-borne computer interfaces for direct-to-consumer disclosure of genetic risk data.

Crossing the chasm from in silico to in vivo

Atul Butte just published a nice paper which illustrates how biomedical informaticians can mine large public (gene expression) data bases to identify novel gene variants with some relevance to human disease. He then goes on to outsource his biological validation to a collaborator half way around our planet to show in vivo that these database driven leads can be reproduced independently. As many aspects of biological discovery become commoditized, it's work like this that reminds us that it is those who as the right questions and who can reach out for the right team to answer them. It should be an important goal of translational science to support agility in this kind of multidisciplinary science-swarming.

iFail

Even in the rarefied reaches of the ivory tower, you will find various previously productive scientists with their hands under the table banging on their personal communication devices. In that context, this report on the failure rate of these devices may be of interest. Nonetheless, there does appear to be real functionality that is well suited for scholarly communication and education.

Primary care burdened by primary data

This report out of the Physicians' Foundation shows that doctors are dissatisfied, are going to quit in droves and 94% said the time they devote to non-clinical paperwork in the last three years has increased. So why does it seem that so many are still trying to get into medical school? Is there a medical practice reality chasm?

'Spinning' up the tissues at Harvard

Ever since the late 1990's we have been working on a variety of methods for retrieving data across disparate institutions that are often not even part of the same corporation. In response to an RFA from the National Cancer Institute, called the Shared Pathology Informatics Network, we developed a toolkit that is now in widespread use, specifically to enable genomic and other biological studies on the millions of specimens that are archived across healthcare institutions. As is often the case, we were late in bringing our own tools to use in our own backyard, but that has now happened. The Pathology Specimen Locator (PSL) is now live at our CTSA Catalyst portal. As shown in this screenshot, with authorized credentials, I was able to see that there are over 10,000 lung cancer samples (you can query for any tissue type and disease) across a wide range of ages. It is this sort of IRB-protected, informatics-enabled data liquidity that will accelerate our translational research efforts. Hats off to the entire team but particularly Andy, Frank, John, and Mark.

Transcriptome of a Trio

Hugh Rienhoff will be speaking about an interesting intersection of expression and genetic transmission studies on December 4th.

Thousands of free books

As per the Lexcyle website "Stanza is a free application for your iPhone and iPod Touch. Use it to download from a vast selection of over 40,000 books and periodicals, and read them right on your phone. It’s a wireless electronic library that stays open 24/7." A quick search for science fiction reveals classics by H. G. Wells and pulp fiction by "Doc" E. E. Smith. All without Digital Rights Management. A real treat.

Images in Development

If an image is worth a thousand words, and a video is 30 frames per second, then these movies of a developing zebrafish must be worth millions. I could not conceive now of a course in embryogenesis that did not include these fascinating and wholistic perspectives on the developing organism. What drives those pulses of development, those three- to four-cell cabals, those intricate dances of the somites? Is it all gradients and cell-cell interactions? Or is there a master control program?

Matching high-throughput genomics to high-throughput mining of the literature

In this study (alas, for-fee-access) , Dennis Wall demonstrates how to mine the literature (aka the biomedical bibliome) to focus the analyses of noisy genomic modalities which by virtue of measuring thousands of genes have to be aggressively corrected for multiple hypothesis testing [ed. Disclosure: I am a co-author]. By examining gene expression analyses of individuals with autism through the lens of the prior literature on neuro-psychiatric-behavioral disorders, he is able to identify genes significantly differentially expressed in individuals with autism, both known and previously non-implicated genes. This is one of a growing list of publications that are attempting to match the high throughput qualities of genomic measurements with an equally efficient automated "reading" of all the painstakingly obtained biomedical investigational literature. It also suggests that an even more detailed annotation by librarians of the existing literature (analogously to what the National Library of Medicine has done for years for the broad addition of meta data) will be productively leveraged in future investigations. I suppose this is where my colleagues from the Semantic Web have another opportunity to feed the search engines of Google.

When consent gets in the way

"When consent gets in the way" is the purposefully provocative title of the article (alas, freely open to the public for only 1 month) by Patrick Taylor in which he questions the current dogma about the relationship between consent, privacy, ethical behavior and the public good. Although I was among the early promoters of a strong model of patient personal control of their healthcare data and healthcare decision-making, I found several of Taylor's points compelling. Notably, that "it is questionable whether consent-for-everything will promote privacy and public trust" and "There is more to ethical decision-making than asking whether decisions are made autonomously. Do they take into account virtues, moral values and human narratives with less impoverished conceptions of human freedom? Are the choices good, and do they respect ethical obligations to others?" These points are at the heart of current trends in increasing the "liquidity of patient data" and are certainly central to the business plans of several large companies. How we respond to these assertions as a individuals and a society will be telling. Not only for our research policies and infrastructure but for our conception of healthcare.

E-science = Librarians 2.0?

In this article (free, but requires registration), in The Scientist, we are given another glimpse into the human components of E-science. I'ts one thing to have a distributed computational network capable of delivering teraflops at the tap of a button, it's another thing to have a biological scientific workforce that knows how to use those cycles at all, let alone effectively. Librarians such as our very own David Osterbur, who are also trained in the biological sciences (and particularly in the use of bioinformatics tools) are a remarkably efficient means to help disseminate a working knowledge of these essential tools to our local communities of biological investigators and beyond.

The Joy of Collecting

Every once in a while, I get a notice that reminds me that there are pleasant avocations that don't quite make it to "Reality TV" fare. Here is one such announcement.

Google wins?

Google just settled a lawsuit brought against them by authors and publishers. At first blush, it seems that Google just agreed to spend $125 million to avoid even greater financial liability. But, as Ben Reis pointed out to me, they only had to invest $125M to get the book publishing equivalent of the iTunes store agreed to by a large swathe of publishers. Interesting jujutsu.

Proceeding with precedings

An interesting subfractionation of the open access space is the Nature Precedings. No peer review but broad visibility and the ability to drive a stake in a scientific claim in a very clear way. In many ways this is as revisiting of the Physics preprint service that was among the original drivers of the architecting of the Web.

Plagiarism-proof

With all the concern about plagiarism, it is refreshing to read this essay on the cultivation of creativity and intellectual self-reliance that masquerades as a recipe for plagiarism prevention. Not that it does not outline some ingenious heuristics to prevent plagiarism. It does, by suggesting the assignment of topics that are uniquely at the intersection of the individual's experience and local identity, so as to defy any generality that would allow easy textual cloning to substitute for reflection and crafted writing. It's quite impressive to witness, even if from afar, the dedication to shaping personalized educational experiences that are broadly informed. With such teachers plagiarism really does seem beside the point.

Finally, and most satisfying, is that this essay is a chapter in a fully open access book that is part of an open access series from University of Michigan.

If you can't lick them

This announcement of the purchase of Biomed Central by Springer is interesting. Who is co-opting whom? Is this acknowledgement of the commercial value of the open access model? Or is it the harbinger of spiraling author fees? Regardless of the motivations or goals, the nature of the editorial boards and contributors to Biomed Central is likely to making Springer tread lightly. Else, alternatives will be generated by the increasingly fluid market of publication venues.

Snatching defeat from the open (source) jaws of victory?

I have used Endnote for at least a decade as my primary bibliographic tool, long before it was acquired by Thompson Reuters. If the reporting of a lawsuit brought by Thompson Reuters is correct, then as an academic community we need to seriously reconsider our prior recommendations of the use of a product that seems to now be configured precisely against the emerging fluidity of referencing and hyperlinking encouraged by the web from its outset.

One of the widely recognized successes of the Web was indeed in its dissemination of several decades of developments in hyperlinking that allowed, among other uses, different sources of knowledge and information to be hyperlinked. The occasionally wobbly efforts in deploying a Semantic Web that includes some minimalistic formalism of knowledge representation constitute an important and worthy attempt to make such hyperlinking and annotation even more efficient and productive. So, when Thompson starts suing open sourced efforts (using Semantic Web standards) to interoperate with the Endnote bibliographic styles, it is (again if the reports are accurate) creating obstacles to the free flow of information between the richly growing ecosystem of reference and bibliographic applications (web-based or otherwise). This runs counter to all the trends in open source publishing and widely shared document formats.

If indeed, I have misunderstood the nature of the lawsuit then I will readily and publicly retract these comments in this forum. Otherwise, those of us who want our students and colleagues to be able to freely exchange their bibliographic data will consider some alternatives.

Academia can lead in setting the example for sharing of research data

This article summarizes the benefits of data sharing for research and makes a few common sense recommendations (excerpted below). If our leading academic health centers would adopt these, the yield to all of us (as consumers of research) of our investment in research would grow rapidly.

RECOMMENDATIONS FOR ACADEMIC HEALTH CENTERS TO ENCOURAGE DATA SHARING

1. Commit to sharing research data as openly as possible, given privacy constraints. Streamline IRB, technology transfer, and information technology policies and procedures accordingly.
2. Recognize data sharing contributions in hiring and promotion decisions, perhaps as a bonus to a publication's impact factor. Use concrete metrics when available.
3. Educate trainees and current investigators on responsible data sharing and reuse practices through class work, mentorship, and professional development. Promote a framework for deciding upon appropriate data sharing mechanisms.
4. Encourage data sharing practices as part of publication policies. Lobby for explicit and enforceable policies in journal and conference instructions, to both authors and peer reviewers.
5. Encourage data sharing plans as part of funding policies. Lobby for appropriate data sharing requirements by funders, and recommend that they assess a proposal's data sharing plan as part of its scientific contribution.
6. Fund the costs of data sharing, support for repositories, adoption of sharing infrastructure and metrics, and research into best practices through federal grants and AHC funds.
7. Publish experiences in data sharing to facilitate the exchange of best practices.

Unnecessary thievery

Several years ago, I was working on modeling the hypothalamic-pituitary axis with my colleague Joe Gonzalez-Heydrich. Unsurprisingly, we could not find any primary data in articles ostensibly describing the relationship between various hormones of this axis. So, I found a very nice shareware program called DataThief. DataThief is "a program to extract (reverse engineer) data points from a graph. Typically, you scan a graph from a publication, load it into DataThief, and save the resulting coordinates, so you can use them in calculations or graphs that include your own data." It worked as billed and recently when I was working with my colleague Asher Schacter on predicting outcomes of drug development from pre-clinical data, I remembered how useful DataThief had been and recommended that he use it to extract the primary data from publications for each of the pharmaceuticals he wanted to study. Lo and behold, it worked again!

If only we had a policy in place that required that all primary data be deposited in a public electronic repository or repositories, then this additional, laborious, and time-consuming step would be unnecessary. Bioinformaticians have been very effective in demonstrating the value of sharing primary experimental data (e.g. high throughput data such as gene expression data or gene variant data) but clinical researchers have yet to achieve the same enlightenment. Until then, please make sure your graphs are very accurate in your publications so that others may benefit from your hard work and the taxpayers' investments in your research.

BLAST this!

David Osterbur often gives extremely well received lectures on the use of public bioinformatics resources for biologists. However, even he is limited in how many audiences he can reach. So, if you know of a biologist who needs some help in the use of BLAST, or the UCSC Genome Browser or even in the search of information regarding herbs and dietary supplements, you will be happy to know that the Countway Library (in collaboration with the MIT Engineering and Sciences Libraries) has made available several instructional videos. Let me know if these are helpful and if you'd like to see more (and about what).

Out of date but not dated?

This is a great example of how the instant-at-hand-reflexive-cut-and-paste nature of electronic information can bridge the virtual to inflict real harm. Contemplate how clinical out-of-date information can be similarly used to boost the medical malpractice of the incidentalome. Will medical libraries step up to the challenge of keeping the medical profession up to date?

[Thanks to Ben Reis for the pointer]

The Harvard Catalyst site is live and open

The name of the Harvard University Clinical and Translational Science Center is Catalyst. Several of its resources are publicly available. For example, you can now see the biomedical scholarly output of our university at a glance. You can find people, buildings, phone numbers, directions and parking across the entire University (!) with 18+ participating institutions. You can see the influenza risk across our local geography and recent history. You can explore which clinical trials are supported by the institutions across Catalyst. You can use Webdash to share web pages and publications and their citations with collaborators and colleagues. You can browse and search the available Core facilities (in the hundreds). And if you need analytic help you can reach out to the Catalyst biostatistics program and genetics program, for example. Within a year, we will reveal the data sharing function called SHRINE which allows authorized users to study patient populations (with regulatory oversight) for pharmacovigilance, and various clinical research projects (e.g genome-wide studies of asthma, major depression resistant to standard antidepressants).

This site is the collaborative effort of multiple informatics groups in our community, including HMS Center for Biomedical Informatics, HMS IT, and the IT groups of Partners Healthcare Systems, Beth Israel Deaconess Medical Center, and Children's Hospital. It was an impressive 107 day dash bringing together diverse applications into one package. It's still rough and in progress and I would welcome your comments as would our Research Navigators.

Just some cocktail party conversation for you: Note the relative decline of protein research (relative to other topics) in the past decade at our University. The same indicators (gratifyingly) show the rise of mathematical topics in our life sciences scholarly output. Our most prolific author is Walt Willet (note the alternate ways his name appears each with its own publication history: to be fixed in the next iteration of Medvane). Note that JBC appears to be a popular journal for our authors to publish in.

Information disclosure makes the case for information altruists

This just-published article in PLoS Genetics by David Craig and Nils Homer reveals how the straightforward use of information technology puts the identify and health risks of individuals within the access of the public if two conditions are fulfilled: 1) Their genome-wide data (e.g. from a SNP chip) was published online and 2) Someone has some DNA from that individual (e.g. life insurance company? Forensic experts?). This is essentially the genomic equivalent of the disclosure mechanisms that Latanya Sweeney highlighted in the case of conventional medical data. As a result of this article, several national research organizations, private and public, are now pulling data down from their websites. This is going to therefore result in at least a temporary setback in genomic data dissemination for research purposes. Which is going to sadden all of us who are working to bring biomedicine forward into the 21st century. In this context, it seems that we will really have to find large cohorts of health information altruists who are willing to share their data with full understanding of the risks, and perhaps full legislative protection against such risks.

Does electronic publishing diminish the breadth of the scientist's scholarly attention span?

In this article in Science Magazine (sorry, subscription required), Dr. Evans argues that it does. By reviewing citation data covering over 50 million articles going back to 1945, he presents evidence that the more a journal makes it's backfiles available electronically, the less the author of a manuscript is likely to cite papers that are further in the past and/or less closely relevant to her research. There are several dissenting voices with regard to this analysis, but let's ponder what it might mean. Dr. Evans suggests one cause may be the relatively poor pre-electronic indexing which compelled readers of print articles to necessarily cast a broader net while browsing the literature. A less charitable hypothesis would be that in the face of an overwhelming number of relevant articles, a prospective author will find enough relevant articles to cite within the most recent published segment of the bibliome and/or the most high profile journals. When enough authors follow this trend (perhaps by following the the citation styles within the most cited articles), the result is a general narrowing of scope of attention of the scientific community within each discipline, both in subject matter and in time. A more optimistic view is that we have all become more agile in our use of electronic search and that in the face of a mountain of less relevant publications, we have become much better at winnowing out the chaff. Or it could be that the ordering of search results by year could be biasing investigators (sorry, subscription required) in ways that they are not aware of. Regardless of the cause, in an era in which we have all called for "evidence based medicine," it should give us pause if our view of evidence is overly myopic due to its electronic immediacy and organization.

More genetics in high school than medical school?

This highly amusing story about fish that are not what they are said to be, should be a sobering wake-up call to medical schools. Here we read about students using third parties to DNA sequence and then taxonomize samples they procured in restaurants and groceries. In the article we read of high-school students (who are not necessarily interested in careers in science) whose scientific literacy with regard to genetics would put many physicians to shame. Admittedly, these students have privileged access to well-informed thought leaders and yet can we point to equally creative and hands on teaching of genetics (and its commoditization) in our elite medical schools? The gap between the public's knowledge of genetics and that of the "professionals" appears to be continually narrowing even while public expectations of the value of such knowledge continues to grow.

Human and machine readable attribution

Whenever we post information on any electronic network, there are at least two audiences: human beings (typically viewing the information through a web browser) and automated agents (e.g. web crawlers). Until recently those who wished to inforrm these two audiences of any use restrictions or intellectual property had to do so twice: in machine readable form and in human readable form. One of the problems in having two forms is that with time (or even from the start) they may not represent the same restrictions or openness. That can lead to, at the very least, misunderstandings and annoyance. Fortunately, one of the more useful ways of the Semantic Web is how it allows for a flexible combination of representation that allows both audiences to be served in the same expression. Here is a particularly useful and recent example.

Collective editing of biological pathways

Following on the successful model of wikipedia a previously centrally managed biological pathways curation activity (e.g. genmapp) has now gone fully community based in the wikipathways project. This is an ambitious project at many levels. The least of the challenges is the technical, how to allow group editing of a connectivity graph? This has been implemented, quite successfully at first glance, by using a Java applet (i.e. called from within the browser). The greatest challenge will be of course a) getting a critical mass of annotators and b) getting collegiality among these collaborators without allow the religious wars that tend to break out over the smallest of disagreements of the appropriate way to represent knowledge. With regard to the former, I note that there already appears to be a community forming around the annotation of apoptosis pathways but when I searched for POMC, nothing was returned although I could find some of the receptors related to that peptide here.

So, it's up to us to make it successful or not. We'll see if the organizers of this resource have found the sweet spot for such a collaborative effort. Here's hoping they have.

Librarians and translational research: One year of accommodation

Given how central informatics is to the Harvard University CTSA proposal, the directors of the HMS Countway Library of Medicine (who also happen to be co-directors of the HMS Center for Biomedical Informatics) recently decided to help out with a challenging problem: Where to house the CTSA leadership (including Lee Nadler and Steve Freedman) until the University will have prepared their more permanent home next year? We (Alexa McCray and myself) offered to give up our offices on the fifth floor of the Library for one year and relocate ourselves on the fourth floor for that one year. Lee and Steve promised not to get too comfortable in our Library and Daniel Ennis of the administration assured us of the efforts made to create a home elsewhere for our CTSA colleagues.

Aging and the C-section

This study is a nice example of how we can track secular trends through publicly accreted data. As we have children later in life it may well be that we are running against some biological limits that Obstetric surgery allows us to overcome. As we instrument the healthcare enterprise using informatics technologies, more and more such testable hypotheses are going to be generated. Will we have the governance in place throughout our healthcare systems to test these hypotheses in a timely and responsible manner? Do we have the expertise and tools in place?

Redefinition of community standards through evidence

This article in the NY Times (free registration required) reports on how Google is planning to use the frequency of search terms in various US communities to show that those previously defined as being outside the community standard are in fact more frequently used than "apple pie". On the one hand, this trend is likely to grow and may likely do so even in medicine (to define the standard of care from the data rather than from the experts interpreting the data). On the other hand, just because the majority follows a particular practice does not make it best, optimal, desirable or even necessarily permissible. It does however, shed considerable light on double standards of various stripes.

Blogosphere mapped!

This map of the blogosphere reveals both the political lay of the very densely populated land of blogs and the degrees of authoritativeness that each blog appears to hold. Where is the equivalent for the medical bibliome?

Pubmed central compliance trends

Just heard some very positive news from David Lipman at the NCBI. It does seem that investigators are responding very positively to the new mandate. Just in the last month, author submissions to Pubmed Central (PMC) have increased by at least a factor of five. The author-contributed manuscripts now exceed the journal contributed manuscripts. It also appears that at least 60% of the expected manuscripts are being submitted to PMC. NIH appears to be well on the way to capturing the vast majority of the published output of NIH-funded science which is a wonderful result for the scientific community and the public which it serves.

Harvard CTSC

As announced, Harvard University has been awarded a Clinical Translational Science Award. The Informatics Program is one of 10 programs in the Harvard CTSA and represents a trans-University collaboration whose initial plans are described here.

Important leadership for Harvard in open access publishing

Stuart Shieber, a professor of computer science at the Faculty of Arts and Sciences (FAS) has now assumed the leadership of the new Office for Scholarly Communication. This is the natural outgrowth of his leadership of the Provost’s Committee on Scholarly Communication and in making the case for Open Access publishing adoption at the FAS.

Meta-data strikes back?

Ben Adida writes in his blog about a very interesting development in the Yahoo search infrastructure. The bottom-line is that by opening up some of the search results processing through metadata-level (i.e. rdf) processing, Yahoo has enabled a much more personalized user experience. Now, we'll see if the developer community runs with this opportunity.

A skeptical view of electronic health record benefits

This report from the Congressional Budget Office (CBO) was widely reported in the press today. The press has mainly focused on the report's skepticism about earlier estimates of greater than $40 billion/year savings from broad national electronic health record adoption. This certainly is going to remain a point of controversy but other questions raised by the report merit broader debate. Do EHR's reduce duplicate ordering of tests and reduce adverse events in the outpatient setting? It has been my own intuition that it does, but this CBO report points out some contrary evidence. It seems that these questions constitute a useful research agenda for the medical informatics community which should be further pursued, in many healthcare delivery settings.

Genetic discrimination is a crime

The Genetic Information Non-Discrimination Act (GINA) was signed into law by President Bush. This is an important first step in moving towards making disclosure of genetic information no more (and no less) concerning than disclosure of medical and family history. All in all a positive step for harnessing the clinical fruit of the genomic revolution.

Get yourself or your post-doc in the 21st century.

For those of you engaged in genome-scale studies but not completely up to speed in Bioconductor and R. This very short course will be "conducted" by one of the leaders of the Bioconductor project (Vince Carey). Thanks to Vince, this short course is free of charge but you do have to register.

Title:
Statistical computing for genome-scale biology:
An introduction to R and Bioconductor 2.2
When: 27 and 29 May from 1230pm to 3pm.
Countway Medical Library: 4th floor
This course is intended to acquaint biologists and bioinformaticians with principles and methods of computing with genome-scale experimental data using Bioconductor 2.2. Registered students will have access to media for installing current packages used in the course. Topics to be covered on the first day include: high-level introduction to facilities for differential expression, gene sets, genetics of gene expression, measurement of CNV; sketch of the R 2.7 language and analysis environment; Bioconductor containers and annotation facilities. The second day will be devoted to case studies in differential expression, genetics of gene expression, analysis of CNV.

Rockfeller leads: Creative Commons License Goes Mainstream for Science

As noted in this announcement from Science Commons:

"The [Rockfeller] Press adopted a new copyright policy that returns essential freedoms to authors and extends permissions to the public that are vital to advancing science. This new policy covers its journals, which include the prestigious Journal of Cell Biology, The Journal of Experimental Medicine and The Journal of General Physiology."

See the original announcement for details

Get arrested and never get lost again.

This comprehensive collection of DNA samples obtained from individuals arrested by an agent of a federal law enforcement agency will have several remarkable consequences. For example, if an information altruist, such as a volunteer for the Personal Genome Project, puts put on the web a substantial fraction of her genome, federal authorities will be able to trivially run a search program to see if any of them match the genomic characteristics of one of the previously arrested individuals. High-throughput genomics finally meets high-throughput forensics.

Help for Public Access Submissions

Today we launched a series of NIH Public Access Policy pages on the Countway web site. This is the official web site for the university’s guidance on the NIH policy, which goes into effect on April 7, 2008. The site represents a collaboration with the university’s Office of the General Counsel, the university sponsored programs offices, and our very own staff. Special thanks are due to Alexa McCray for her leadership in this matter and to David Hummel, Scott Lapinski, Doug Macfadden, and Halip Saifi, for creating this terrific resource under enormous time pressure. Please take a look at the site (https://www.countway.harvard.edu/publicaccess) when you have a chance.

What is the evidence?

This recent announcement of the lack of efficacy of a widely prescribed "cholesterol lowering" combination (two drugs) agent should give us pause. Those of us who practice medicine know all too well how much of what we do is art and not science. Despite billions of dollars of research that linked blood biomarkers such as LDL and CRP to heart disease, we now have a well-run trial that seems to show that the lowering of these "bad" biomarkers does not affect thickening of the walls of arteries in a manner previously thought to result in disease. This once again points to the importance of unimpeachable curation of medical evidence and its clear and untrammeled communication to patients and providers alike.

No sound before its time?

This late breaking story about the recovery of the sound of a French recording, predating Edison's famous recording has relevance to our modern efforts in digital document archiving. Apparently, Edouard-Leon Scott was able to record sound but not in a way that his contemporaries could play back. It makes the point that archives that do not provide for an immediate "read out" can easily be lost to posterity even if they are physically durably accessible. This is the distinction between light and dark archives.

Notable Book: Inhuman Research, 5.13.08

Every year, we showcase 3-5 notable books. This one, written by Alfred Pasternak, I discovered through the outreach efforts of the Wiesenthal Museum for Tolerance in LA. Dr. Pasternak will be joining us on May 13th for a presentation at 4pm, followed by book signing. He will be accompanied by Ms. Liebe Geft, the director of the Museum of Tolerance, so I am quite sure it should make for a very interesting couple of hours.

Large-scale extraction of gene-level physiology from the bibliome

If you have performed an expression microarray experiment, or a genome-wide association study, or a high-throughput proteomic experiment, you will have had a librarian moment. In that moment, you wish that someone would have organized all that had ever been written about the genes or segments of the genome that came up in your experiment as "significant," typically by some statistical measure. The alternative of having to read hundreds if not thousands of papers is unappealing. Because that librarian moment is so common in this genomic era, a slew of companies have emerged to provide a systematic annotation linked to the literature. In these endeavors, Their ambitions greatly surpass those of the ontologists who are "merely" satisfied with a a few labels for each gene regarding biological processes, functions and cellular locations and they seek to provide whole pathways of gene regulation, and signaling. For this reason, I was quite intrigued by a presentation I recently heard at the C-SHALS conference in Cambridge, MA by a bioinformatics group at Sanofi Aventis. They provided that all too rare and extremely valuable style of review in biomedical science: The consumer report format. That is, they compared several of the leading bibliome-based gene annotation packages and systematically reviewed coverage and specificity of these competing wares. These products fell into two categories: those generated by human curation (Ingenuity, and GeneGO) and those by automated means (Temis, Ariadne). From my perspective the bottom-line was a) the coverage of all these packages is spotty and remarkably non-overlapping (of genes and processes) and b) the human-driven packages were dramatically better in several dimensions. Another full-time Librarian Employment Act, if librarians take this challenge of annotation as their own.

Technorati Tags: Informatics, Scholarship

Absence of a plan

Oya Rieger has produced a very useful and mercifully brief report for the Council on Library and Information Resources. She quickly brings us up to speed on the various large-scale digitization initiatives, reviews who the key players are and reveals, alas, that libraries are followers not leaders in these initiatives. Moreover, she also highlights the lack of a national plan for digital preservation and the myopic lack of coordination across libraries. Particularly revealing was the evidence of the sweeping aside of the meticulous but laborious curatorial plans concocted by librarians. In order to achieve the efficiencies required by the commercial partners who, of necessity, wished to measure success in years and not decades or centuries, These prior plans were greatly simplified and curatorial judgement replaced by broad and blunt heuristics. The report ends with a number of useful suggestions, many of which will require significant changes in the sociology of library stewardship.

Technorati Tags: archives, Collections, Open Access

HMS Rewind: Harvard Medical School 1997

For those of us born before 1990, it may be hard to remember just how recent a development the web is. The Wayback Machine however provides a remarkable glimpse into how far we have come. Contrast this 1997 Harvard Medical School site with this one. Of course, if you are entering the class of 2011, the World Wide Web has always been an online tool. For these students, the preservation of digital content is taken for granted but with exceptions such as the Internet Archive (which depends on philanthropy and grants) huge tracts of this content are dissolving irretrievably.

Technorati Tags: archives, Collections, History, Scholarship

Do we have enough informaticians?

It is generally agreed that we do not have enough informaticians. National organizations have posited that we need to have at least 10,000 informaticians by 2010. Other countries are investing heavily in such training. In Germany, for example, the number of graduates with degrees in informatics has doubled since 1997. But what are these informaticians supposed to know? Answering this question would go a long way to determining just who should be trained and for what purpose? Should they be able to answer these questions? Or should they be able to answer these? Further, should it be MDs that define the competence requirements or could it be nurses, or librarians? More to the point, why don't informaticians collaborate and share their expertise with individuals of other disciplines? And vice versa. For that matter, can informaticians of different stripes identify a common set of skills or is informatics going to balkanize into isolated sub-discplines? These questions point to the increased centrality of information sciences to the pursuit of clinical care and biomedical research and the resulting push to speciation to meet the varied needs of these biomedical constituencies.

Technorati Tags: academics, Informatics

Reference your open access articles for your NIH grants starting April 11th.

As per this NIH policy, all grants submitted after April 7th, 2008 should reference your open access articles. If you are faculty at HMS, the Countway Library will provide support for you to ensure that all the publications heretofore that result from NIH funded research will be available as open access articles.

Technorati Tags: academics, Open Access

Electronic Medical Records: The Promise That Keeps on Promising

It has been well over 40 years since the vision of electronic medical records leading to greater efficiencies and quality of healthcare was articulated. It just goes to show that the problem was always much more difficult than anyone anticipated.

Technorati Tags: healthcare, Informatics

Multilingual curation of worldwide outbreaks

A passenger who had taken a Greyhound bus ride to Calgary was found to have a case of tuberculosis and may have put the passengers at risk. He is currently being treated in a hospital. Also, there was a klebsiella pneumonia infection reported of a Swedish patient who had been on holiday in Greece. Further, on February 8th, there was a report of 13 cases of Botulism (one fatal) in the Tyumen Oblast region. The source of infection was apparently a homemade omul dish, prepared from fish that was ineffectively salted. These are just three of hundreds of potential public health concerns reported worldwide through the Healthmap application. Since, I last looked at it, it has expanded its sources of information from ProMED mail and Google News to the WHO, Moreover Technologies, and Eurosurveillance. As before, all information is available through a Google map and it now includes Spanish, French, and Russian versions. The result is one of the better examples of how a decentralized army of paid and unpaid rapporteurs can bring global health awareness to our public officials and to the public without requiring ponderous, extended and often unsuccessful setting of "standards" and standard operating procedures.

Technorati Tags: epidemiology, Informatics, Scholarship, Study design, world health

Overcoming physical space limitations

Want to add more books to your library? Can't afford those compact shelving systems? Worry that the weight of books will defeat your building's structural limits and your staff's stamina? Fear no more, affordable library space is now available in SecondLife at several expanding libraries, including the consumer oriented InfoIsland. No need for stairs, no matter how many floors your library soars as your patrons can fly to any level they care to, no matter their age or physical abilities. Your holdings are safe, unaffected by the elements, available to any patron, until someone pulls the plug.

Technorati Tags: archives, Collections, consumer

Open Access accounting?

Springer now provides a choice for authors to have their publication in any Springer journal appear as an open access article. As in many other open access journals, the author is charged a fee. In this case the fee is $3000 in addition to any usually author-borne publication costs. So, are the libraries gong to pay as much to Springer as before or does the additional funding reduce costs? Springer claims that it does. Is anyone willing to bet that costs will be less than the current costs plus inflation?

Technorati Tags: economics, Open Access

The Case for Open Access

Robert Darnton, the Director of the Harvard University Library, states the case for open access. He also describes a policy that that has been assembled carefully, tirelessly, and with broad consultation in the Harvard community through the leadership of Stuart Shieber and Sid Verba.

Technorati Tags: academics, Open Access

Accounting for Academics

"Publish and perish" has been successfully pursued by the hundreds of thousands leading to the sustained exponential growth of the bibliome. This growth in turn has created institutional stresses in creating balanced and standardized reviews of promotion cases and therefore we should not be surprised that there are now proposals to have a promotion process that is increasingly bibliometrically driven despite a rearguard action. Will our academic rank equal our pagerank in 20 years?

Technorati Tags: academics, Scholarship

Archival black hole

This article does a very nice job of addressing the challenge of archiving electronic correspondence. Whereas I can go to L2 and see the notes of Joseph Murray as he prepared to perform the first successful transplant between homozygous twins, I know that I am not going to be able to find the correspondence describing equally important findings of the last twenty years. Why? Because we are not systematically archiving the electronic mail of our scholars. This is a classical example of where perfect is the enemy of good. There are myriad issues that have to be addressed if all such correspondence is to be stored and retrieved on demand. However, a few compromises make the task much simpler. I will review these in future entries but have no illusion, the libraries of today are almost all falling down on this job. A hundred years from now, historians will wonder why they can learn more about biomedical research, up close and personal, in the 1950's than in the archival black hole of 1990-2010.

Technorati Tags: archives, History

Modern perspective on contagion.

On January 31, Harvard's Open Collections Program (OCP) launched its third online collection, Contagion: Historical Views of Diseases and Epidemics. The new, web-accessible collection is online now. The Countway's collections are heavily featured. More to come. In an era anticipating global pandemics, this collection is all too relevant.

Technorati Tags: Collections, healthcare, History, Scholarship

Autonomy and guardianship of our own clinical information.

In 1999 I had an inspiring conversation with one of my more brilliant colleagues, Dr. David Margulies. David was floating the idea of creating a commercial ecosystem whereby there was just in time bidding over the Internet for different service package for patient care. The nature of such packages would range from such well-established services as home visiting nurses but would extend to the cost of supplies for surgical procedures to entire disease management package for instance, lifetime diabetes care. In doing so David presciently was combining what would become in 3-5 years known as Web 2.0 technologies and some free market principles to argue that such an open market would create such efficiencies that would both lower health care costs and encourage standardization and improved quality of the products of health care delivery. Although the company founded around this idea, SmartAgents (with which I never had any relationship), was eventually acquired by a larger company, it is not clear to me that any of these ideas ever came to their full fruitition. From this admittedly biased perspective, it is because yet again the buyers of the product, the recipients of the product and the payers of the product were, as they have been for a long time in health care, been poorly aligned. Market efficiencies will make the most sense when patients will have transparent access to the relative costs and qualities of packages afforded to them at the time they purchase entire health care packages such as insurance so that an efficient market will have appropriate feedback mechanism in terms of the consumer of that product. However, with all the complicated details required of such a system, the sine qua non precondition will be portable transparent access to patient information under patient control so that for a given state of disclosure, a vendor of a particular health care good can efficiently and accurately bid to provide that care. Let’s be clear we are not asking patients literally out the door with their leg in a cast to put out on a medical “eBay” request for bids for their after surgical care. In directly identifying the patient and their patient controlled record as the conduit for decision-making on who has access to their information and who gets to bid on which services to their healthcare professionals (or other decision makers) we are putting the real payors in charge. And we, the patients can decided whether the payment system we adopt is one of full payment, partial payment and so on. We can decide to bid for services through collectives such as patient advocacy groups, employers or even hospitals but the decision is ours. This may seem a little too coolly rational and heartless (or naively optimistic about individual autonomy) but let’s contrast that to the current system where the patient is not a party at all to the bidding for healthcare products, they have no knowledge of whether the best such package was selected for them or the cheapest package. They have furthermore no idea to what extent they are in a long term, short term or committed relationship with these vendors or products. By revisiting the maxim “she who controls information exerts control” through the use of personally controlled records we are re-asserting or perhaps asserting for the very first time the patient’s fundamental control of the market around their services. Again, this does not mitigate the need for collective bargaining for healthcare services, nor does it remove expert decision makers from decisions regarding, which packages of health care are in the best interest of the patients. It does however provide transparency to the patient and a rational basis for them to decide whether they are getting, in their opinion, value for their money or whether should they seek such value elsewhere. This is no more (unfortunately) and no less than the cellular phone companies provide us all when they attempt to woo us to adopting one of their service plans. The much larger stakes of health care makes such transparency more, not less necessary. Given my recent experiences with my cell phone (and my mother's health insurance invoices), I do hope we end up with more transparency.

Technorati Tags: consumer, economics, healthcare, Informatics

Copyright and open access.

The ecosystem of rights and copyrighting biomedical publications is about to be disrupted by a very important and useful piece of legislation. To this point, this interesting webcast by Matthew Schruers is very likely to be of interest.

Technorati Tags: Open Access, Scholarship

Interrupted in mid-sentence: Judah Folkman

There have been several wonderful public tributes to Judah Folkman. And yet, I cannot escape the heavy sense of his being interrupted in mid-sentence. Just a month ago, I had a follow-up meeting with him and one of my graduate students to discuss her findings that meshed very well with the scientific framework he had built over his life. He was excited, enthusiastic and full of proposals for how he could help her investigate her ideas. As in every meeting, we left energized by his creativity, breadth of vision and generosity. As hundreds of others, we have lost a partner in our most inspiring scientific and collegial conversation. Wearing my librarian hat, I also cannot help but notice that all the accolades only scratch the surface of his accomplishments. He has contributed so many breakthroughs that each on its own would serve as the basis of a very satisfactory and celebrated career. So here, for the record, is a smattering of his achievements:

• Pioneering work on novel materials for anesthesia.
• Surgical treatment of a variety of structural birth defects.
• Ground breaking insights regarding angiogenesis and malignancy.
• New vehicles for the delivery of drugs.
• Novel therapies for glycogen storage disease.
• Early insights into the effects of structure and microenvironments on development and tumorigenesis.
• Champion of the priority of the doctor's obligation to the patient.
• Targeting of non-cancerous diseases for (anti)angiogenic therapy.
• The understanding of how we all live riddled with dormant micromalignancies.
• Recurrent generosity in sharing credit and collaboration.
• Identification of promising antiangiogenic agents.
• Perpetual optimism

We miss you Judah.

Technorati Tags: In memoriam, Noteworthy, Scholarship