This temporary proscription of large segments of the web to users of the Google search engine vividly illustrates the application of the power of ontologizing. Whole segments of our collective electronic corpus can be made obscure or brought to the top of our societal awareness merely by changing a few bits on an electronic tag. Librarians of the world unite! Yours is the power to [re-]organize.
This story at cnn.com is of the kind that usually makes me cringe because it clearly provides advertising for a new healthcare technology that has not been widely tested and uses a truly dire personal circumstance to illustrate that the new technology can almost magically save the day. This is a technique that has been repeatedly used to hype several drugs or devices or alternative medicines that ultimately have not proven to be helpful (or worse). Yet in this instance, it seems that it is the real deal, a brain tumor that was effectively inoperable and there was a newly available technology that could do the job. And it was applied in the nick of time. Let's assume that this case in fact represents the appropriate application of technology. It might be interesting to view it as an opportunity to ask some questions of the current peer review and publication process in order to meet the following goal: timely communication of the best globally acquired knowledge for state-of-the-art treatment.
- Where can we find an authoritative system for timely reviews of new healthcare treatments on which patients with experience or physicians (in this instance, parents of children with an intracranial teratoma and neurosurgeons).
- How do we minimize the "gaming" of such an authoritative system?
- Is there a mechanism in the current academic publication pipeline that would support such a system or should we look to electronic social networks, mass media and word-of-mouth to provide the solution?
- Can we represent the degree of certainty we have about efficacy of a new treatment in a way that is both intuitive (i.e. actionable by the lay public) and that has solid statistical or evidentiary support?
- If we do not support timely dissemination of potentially useful technologies, is our ethical position suboptimal? Alternatively, does any premature knowledge dissemination fly in the face of the time-tested admonition to first do no harm.
- Can the federal government provide a transparent and timely vehicle of expert opinion in this regard?
The rate limiting step in the development, dissemination, and adoption of informatics technologies to the healthcare system is in large part due to the lack of enough individuals with expertise in this domain. It is therefore should be a source of considerable satisfaction (and some surprise) that among the first acts of the 111th U.S. Congress is likely to be a proposal that speaks to increasing the pool of informatics-trained professionals:
"The Secretary, in consultation with the Director of the National Science Foundation, shall provide assistance to institutions of higher education (or consortia thereof) to establish or expand medical health informatics education programs, including certification, undergraduate, and masters degree programs, for both health care and information technology students to ensure the rapid and effective utilization and development of health information technologies (in the United States health care infrastructure).
Activities for which assistance may be provided .... may include the following: (1) Developing and revising curricula in medical health informatics and related disciplines. (2) Recruiting and retaining students to the program involved. (3) Acquiring equipment necessary for student instruction in these programs, including the installation of testbed networks for student use. (4) Establishing or enhancing bridge programs in the health informatics fields between community colleges and universities."
Then a lot of detail around mechanisms of support. Quite impressive.
Thanks to Joe Barillari for the tip.
In this article in a new journal (GenomeMedicine), we learn of the current efforts at the Cardiff University Institute of Medical Genetics to annotate the clinical meaning of the human genome. This database (of "over 85,000 different lesions detected in 3,253 different genes, with new entries currently accumulating at a rate exceeding 9,000 per annum") is arguably the human genome project most relevant to medicine. It also seems quite akin to curation projects very familiar to librarians. Can we use the knowledge and experience of librarians to increase the quality and timeliness of such genomic annotations? Can librarians learn from the efficiencies of the relatively small team of curators at Cardiff?
Finally, in the spirit of open access, would public funding of the Human Gene Mutation Database enable full free access to all the annotations?
In the words of my colleague, Ben Reis "The days of being anonymous in public are officially over."
Go to the following crowd shot and realize that you can zoom in all the way. You can see the faces of thousands of people in detail.
With the inauguration of a new U.S. president, the focus has returned to the challenge of implementing an equitable, affordable and high quality healthcare system. In that perspective, three relatively recent books speak to the challenge. Two of them written by our own colleagues. These are:
- "Who Killed HealthCare? : America's $2 Trillion Medical Problem - and the Consumer-Driven Cure" (Regina Herzlinger)
- "The Innovator's Prescription: A Disruptive Solution for Health Care" (Clayton M. Christensen, Jerome H. Grossman M.D., Jason Hwang M.D.)
- "Critical: What We Can Do About the Health-Care Crisis" (Tom Daschle)
I remember talking to Jerry Grossman, a year ago, about the future of healthcare and how optimistic he was that technology could serve to aggressively re-align our care delivery system. I hope history will vindicate him but I worry that we will have to first face much more honestly and transparently the conflicting drivers of maximization of societal health outcomes vs. maximization of personal health outcomes. These three books provide models of how to meet this inevitable tension and it is likely the President's advisors are fully aware of all of them.
if you have some interesting to report. This is impressively illustrated by this new journal of undergraduate research that was recently launched. Many of these articles would do "first tier" journals proud such as this one on a very finely tunable encapsulation technology for cells.
Joe Nocera appears to castigate Steve Jobs in this article regarding his secrecy about his medical condition. It is often argued that public figures both in government and publicly traded companies have to be transparent in disclosing their medical condition. Others have taken the further step of arguing that our perception of any privacy is sorely askew and therefore we should just accept that in cyberspace everyone knows you are a dog. Although I have argued for information altruism, most of us have some reasonable expectation of privacy. Disclosure as an act of altruism or even exhibitionism is not in the same category as disclosure compulsion. It's not just worrying about employment and insurability, but about stigmatization that may not even be widespread. For example, if a CEO has found his life to be at risk (and which of ours are not?) and does not want to tell his family about it yet, is it really acceptable that he should be compelled to do so on the behalf of some perceived public good?
Are we going to ask all CEO's to get full personalized medical and genomic screening to predict their functional lifespan because of the hoped-for financial risk perspective? Or only when they are going to die within the year? Or if their exercise capacity is down 20% from the year before? And what is the fundamental basis for arguing that such disclosure should be restricted to the CEO? How about other important jobs: CFO, CIO, the head of Human Resources? Corporate Counsel? Granting a "right-to-know" on any other person's health status is likely to be a very slippery slope. Does your information want to be free?
There is a growing array of patient/consumer directed educational materials for a variety of medical conditions, surgical procedures, and risk assessments that probably exceeds that available in many doctor's offices and are accessible wherever there is a web browser. Given the renewed national interest in harnessing automation to improve healthcare, a strategy to integrate these valuable resources into clinical practice and patient awareness would appear to be highly leveraged.
Perhaps it is completely analogous to the ascendancy of the blogosphere in news reporting, but it is nonetheless shockingly satisfying to see this article on the ascendancy of the R statistical programming language. As a former user of its commercial competitors, I became disenchanted with their licensing policies, not least of which was the hassle of reconfiguring the license manager every time I had to re-install the software on a new laptop. But when I jumped ship, it also quickly became apparent that through the enthusiastic, almost cult-like, devotion of legion programmers and statisticians across the globe, the R software code base provides a far richer set of functionality than any other. Particularly when it comes to rapidly evolving areas of quantitative science such as genomics, R software (especially the huge set of R modules collectively called Bioconductor) have provided the best and most up-to-date functionality. Moreover, the educational programs that have grown around R have been equally first rate. I have recommended this book on learning R for introductory statistics to many colleagues who have then confessed that it was the first time that they had truly understood basic statistics.
I am quite sure that anybody presenting the R "business model" eight years ago would have been scoffed at by most experts in software distribution and dissemination. Yet it is but one example of what can happen if the the producers and consumers of a knowledge or information product are the very same academics. Perhaps we can one day achieve the same efficiencies in disseminating our scholarly publications.
Nothing induces a deep anesthetic coma faster than yet another discussion about what the field of biomedical informatics comprises and what are the expected competences. Ira Kalet has therefore done us all a favor by writing a book on Principles of Biomedical Informatics. This is not a book for those who primarily wish to approach medical informatics from the perspective of management, or policy or governance. It is a technical book that teaches by doing much in the vein of some other very successful texts. And in biomedical informatics, doing often means programming.