Electronic Medical Records: Privacy, Accuracy, and the Digital Age
My brother is a surgical resident. A few weeks ago he was complaining about the difficult Electronic Medical Record (EMR) software his hospital is using, particularly the unintuitive user interface. Then I read an article in the New York Times about the business opportunities that are growing in the world of electronic health records. According to this article, two brothers, who have already developed a software EMR package for small-practice doctors’ offices, are waiting for the Obama stimulus package to essentially kick in, as the medical community will eventually have to migrate to digital patient records, or pay the penalties for failure to do so. To me, there are two primary issues: privacy and accuracy. In extolling the benefits of the EMR (Saves lives! Lowers costs! No more pesky paper!), what will prevent the doctors’ offices, hospitals, and health insurers from abdicating responsibility over the care and quality control of those records? I realize that the e-document movement is permeating all levels of our lives, from the personal to the professional, but I cannot help but feel that an attorney’s e-discovery litigation case papers are better protected than patient information in a hospital. Further, not everyone knows that HIPAA entitles you to your entire medical record, doctor’s notes and all (which is why, from what I understand in talking to several medical residents, doctors are usually instructed to take care in how they write about the patient in the medical record, for subpoena purposes and patient record requests; it probably is not a good idea to write “this patient is an idiot”). But in the same DHHS website, HIPAA privacy rules seem to have a series of caveats. A Washington, DC public interest research center has the same concern: Apparently, the DHHS proposed rules required that privacy breaches need not be reported to patients unless the provider or insurer felt that there was a “significant risk” of harm. So then the discretion for the standard of “significant risk” is left to a large impersonal corporation or a doctor who does not have the time to return phone calls? Not good. DHHS is currently reconsidering that medical breach notification rule, but this caveat that the covered entities determine whether “significant risk” exists, does not appear on the DHHS’s website summary pages. Accuracy is another issue, and I believe it will be a growing concern as records are increasingly kept in digital format. With the health care companies pushing the doctors and hospitals to get patients in and out of the hospitals as quickly as possible, the quality of time spent with the patient will inevitably be reflected in the patient EMR. Case in point: I visited the ophthalmologist a couple years ago for a routine check-up. I advised the technician that I had scar tissue on my left cornea from an old boxing injury. The technician then inserted the eye pressure gauge into my left eye and the instrument tore into my cornea. The doctor treated me for this second injury but my medical record has no indication of this new injury from the doctor’s office. How do I know? When I mentioned the injury to my GP in a routine checkup, he had no idea what I was talking about. I obtained the medical record myself and added notes for my own records, indicating the date and type of this new injury; I may need this information for future eye care. Another example: my GP’s EMR for me does not include the list of drugs to which I am allergic (it also does not include any reference to the eye injury from above). I have called his office, but I have yet to see that information added to the EMR. This information is in his paper record on me (I know because I filled out the “patient information form” upon my first visit years ago), but the problem with the EMR is that it can be replicated to any doctor in the country with one phone call, and the information will be inaccurate – even though (or because?) it is digital. So the government will monitor the transition to EMRs, a "cost-saving" and "patient care" measure, but just who benefits here? Johanna Blakely-Bourgeois, Pratt SILS Continue reading
Learning to Navigate Free vs. Fee
If I’ve learned anything in nearly two years of studying government and legal information, it’s that there are two sides to the same coin. The first side is found in federal depository libraries, in endless rows of Serial Sets and Statutes-at-Large. It’s found at GPO Access and more recently at FDsys, and that’s if you’re lucky and your research requires federal materials, since state government information gets even murkier. The second side of government information is under lock and key through online databases like Westlaw and Lexis, or in costly shelf sets like United States Code Annotated from West or the looseleaf services provided by CCH (now part of Wolters Kluwer). Through my excellent legal research and legal database classes at Pratt SILS, I predominantly worked the way a law librarian, or law school librarian, would work to access government information. I cut my teeth on these powerful, consumer-driven products that prided themselves on presenting the most authoritative, comprehensive, editorially superior resources for the modern law librarian. That is, the modern law librarian that can afford the astronomical price tag. I don’t regret my time inside this lock-and-key world. These resources, particularly the online tools from Westlaw and Lexis, taught me how to construct powerful and effective searches and how to separate the primary source content from their editorial embellishments. But now I am studying the same materials from the perspective of a very different librarian - someone who is likely not going to be doing legal research, but rather providing services and managing collections of free government documents either procured through the FDL program or through the online portals managed by GPO. This transition sometimes feels as though I’ve got the language and missed the dialect. I know the structure of government publications like the back of my hand, but finding it on the shelves can be an exercise in futility when these well-constructed publications are increasingly (and understandably) given up in exchange for online access. And finding it online through GPO Access, THOMAS or FDsys sometimes feels like I’m being asked to type with my hands tied behind my back. I have date restrictions that stop me from going further back than the mid-nineties, typically, and when I do find the legislation or regulation I’m looking for, I often have to go elsewhere to learn more about its current status. And the courts are a hodge-podge of accessibility on the web, particularly compared to the for-cost resources for federal district and appellate courts. Simply put, the materials available for free from the government aren’t as immediately accessible digitally as those made available by commercial vendors. But perhaps that’s not as dire as it sounds - perhaps I just did myself a disservice by starting with the commercial products, when in fact they serve two very different patrons. The issues of access and answers are important ones for government documents librarians, I sense from my course work. Their patrons aren’t the lawyers who pay for commercial content from vendors like West. Their patrons are resolving personal issues, perhaps agency regulations that affect their business, or they are students doing coursework that requires a familiarity with a particular piece of legislation, or they’re researchers who need the statistical data that the government publishes. Do they need it the day after it’s published, or replete with annotations that explain its legislative history or precedent value? Not necessarily. I’m learning that it’s more important that those patrons have a free, reliable resource for the government materials they crucially need, serviced by librarians who understand the value of collection preservation and long-term access. For these patrons, it seems less important that the information is attractively packaged with sophisticated search capacities. I’m glad I’ve been able to do my coursework from both sides of the government information coin - the side for the few, and the side for the many. I am perhaps hindered from time to time in my research strategies as I adjust to the world of depository government information, but I’m balancing this with an appreciation of just how important that makes the guardians and disseminators in the FDLP. - Krissa Corbett Cavouras, Pratt SILS Continue reading
Live blogging Depository Library Conference Fall 2010 #dlc10f
We'll be live blogging the Fall 2010 Depository Library Conference from Washington, DC. The agenda is chock full of interesting discussions and presentations. We hope to at least live blog all of the main council sessions, but all tweets with the hashtag #dlc10f will also show up in the live blog. We've also created a twapper archive for posterity.
National Archives and The University of Virginia Press to Put the Founders Online
National Archives to Put the Founders Online, U.S. National Archives and Records Administration, Press Release (October 12, 2010).
The National Historical Publications and Records Commission (NHPRC), the grantmaking arm of the National Archives, is pleased to announce a cooperative agreement with The University of Virginia (UVA) Press to make freely available online the historical documents of the Founders of the United States of America. The NHPRC and UVA Press will create a new web site which provides access to the fully annotated published papers of key figures in the nation’s Founding era. The project is designed to include the papers of George Washington, John Adams, Thomas Jefferson, James Madison, Alexander Hamilton, and Benjamin Franklin. A prototype web site including the contents of 154 volumes drawn from print editions of the papers of Washington, Adams, Jefferson, and Madison will be prepared by October 2011. The fully public version will be launched by June 2012.Continue reading
GPO and FDLP Must Not Go
October 18, 2010 / 2 Comments on GPO and FDLP Must Not Go
[UPDATED: Seavey's article is attached below since it's not yet available online. It's only fair that readers should have the opportunity to read Seavey's words as well as our analysis. We do so to further academic discussion and debate.] In his article in American Libraries,"GPO must go," Charles Seavey accurately highlights an important problem -- how to enable 100,000 non-Federal Depository Libraries to better use government information to inform and empower their patrons. We agree with his point that widespread access to government information is a worthwhile goal for all libraries. However, his proposed solution -- the abolition of the Government Printing Office (GPO) and the Federal Depository Library Program (FDLP) -- is many times worse than the problem it proposes to cure. We believe that Seavey conflates "printing" with "publishing" and "access" with "preservation" and in so doing diminishes the importance of GPO and the FDLP in the life-cycle of government information. But the biggest problem with Mr. Seavey's proposal is that, while accurately emphasizing the issue of access today, it completely ignores at least four key advantages that we would lose without the FDLP: 1) a more reliable preservation model that assures long term, free access; 2) a system that is tamper-resistant and tamper-evident; 3) a system that creates, uses and reuses metadata in a cost-effective fashion; and 4) multiple collections that combine Title-44 materials with non-Title 44 materials in collections that are user-focused and that provide user-centric services. The FDLP has been providing these advantages for printed publications for almost 200 years and, thanks to technological advances and initiatives like the LOCKSS-USDOCS project, it is increasingly capable of providing these advantages for digital information as well. In the world proposed by Mr. Seavey, all government information would be made accessible by a new "Government Information Access Agency" (GIAA). End users and libraries assisting patrons would access the information directly from government-controlled web servers. This would be fine as long as we could rely on the wisdom, funding, and non-political benevolence of the federal government. But we already know we can't. 1. Relying on a single organization (the federal government) to preserve all government-produced information is risky at best. It puts the information at risk of loss due to changing budgets, changing missions, and government interpretation of what information should be available to the public. By distributing digital files to Congressionally-mandated FDLP libraries, we will have multiple funding streams, multiple user-communities, multiple technologies, and multiple preservation-locations. Together, these eliminate the single-point-of-failure risk endemic to a single preservation system maintained by the federal government (This is not hypothetical; we all remember the nearly 1 month outage of the GPO purl server last summer right? [http://freegovinfo.info/node/2704] ). 2. The federal government has a long history of attempting to recall or delete information that puts the government in an unflattering light or out of -- often misplaced -- fears about national security. With custody of government information in the hands of government alone, digital information can be deleted or altered at will without any public input. For example, see Steven Aftergood's 2005 Slate Article, "The Age of Missing Information" and OMB Watch's "Information removed from agency websites." Distribution of digital information to FDLP libraries would provide the same guarantee of tamper-resistence that paper has in cases such as the attempted withholding of Foreign Relations of the United States, 1964-1968, vol. XVI, and in proving evidence of tampering such as that provided by the recent censorship of the Afghanistan war memoir Operation Dark Heart. (See the end of this post for other articles of interest on this topic.) 3. Seavey overlooks the importance of metadata in digital publishing, preservation, and access. Adequate metadata that describes the provenance, authenticity, fixity, and usability of digital objects is essential. If anything, we need more standards -- and open standards -- to be enforced by government "publishers." Content creators rarely want to bother with this, nor are they equipped to do so. The role of a digital Government *Publishing* Office is essential. GPO is well-positioned to fulfill this role by establishing, enforcing, and using digital publishing standards for born digital content. Metadata also plays an essential role in organizing information in collections and making it findable and discoverable. Just having an unknown subset of government information in volatile, commerical, full-text indexes in enormous search engines or relying on the often-primitive search engines of agencies is not adequate and should not be acceptable to government information professionals. See for example, the CTD/OMB-Watch study, Hiding in Plain Sight. Or try this yourself: Search Google for BP Oil Spill [http://www.google.com/search?q=BP%20Oil%20Spill&ie=utf-8&oe=utf-8] and notice that the first page of results doesn't list .gov sources at all, just news sources and the BP website. - Compare those results to the 17 reports and Congressional reports available via the same search in catalog.gpo.gov. Using Google to find government documents/information deletes the whole intellectual process of information organization from the government information lifecycle equation. 4. By eliminating the FDLP, Seavey would also destroy the strength of multiple collections that serve distinct user-communities, which, in the digital world, need no longer be geographically based. With a digital FDLP, libraries will be able to do what the government cannot do: build collections that include both government and non-government digital information combined in well-organized, easy-to-use collections that focus on topics, subjects, and disciplines rather than provenance. By distributing digital government information to FDLP libraries, GPO will facilitate many user-centric collections and services that it (or a GIAA) could never hope to provide or maintain. While we at FGI greatly sympathize with the idea of spreading awareness of, knowledge of, and skill in government information use to the nation's libraries, we are deeply skeptical this can be done without a core network of libraries with deep government information knowledge, experience, and expertise. Seavey may be right when he says that, traditionally, FDLP libraries have not much engaged non-depositories in dialog and training, but in the digital world, this is changing as more FDLs are reaching out to their communities. The explosion of Web 2.0 tools and greater bandwidth are creating opportunities to transfer knowledge and expertise through the GPO OPAL webinar program [http://www.opal-online.org/archivegpo.htm], online conferences like the Six State Virtual Conference, the 21st Century Government Information course materials on WebJunction, and groups open to all libraries on ALA Connect and Facebook. The list goes on. If there was no FDLP, the expertise that is driving this outreach might evaporate and these materials would not have a government information focused community to create them and make them available. The documents community has started teaching and engaging users and libraries from all walks of life. The digital world is already empowering just the change Seavey suggests we need. We should encourage this, not thwart it. The many issues surrounding access to and preservation of government information will not go away simply by playing semantics or changing the name of a government agency. The many people working within and serving the ideals of the FDLP maintain a critical role in the government information ecosystem. The FDLP shouldn't be tossed aside, it should be assisted and well-funded in its catalytic work of diffusing awareness and expertise in the use and stewardship of government information regardless of format. References: Seavey, Charles. GPO Must Go. American Libraries, October 2010, p. 33 Aftergood, Steven. "The Age of Missing Information," Slate, March 17, 2005. Accessed at http://www.slate.com/id/2114963/ on October 11, 2010. Center for Democracy and Technology (CDT), OMB Watch. Hiding in Plain Sight: Why Important Government Information Cannot Be Found Through Commercial Search Engines (Dec. 11, 2007) http://www.ombwatch.org/files/info/searchability.pdf Heanue, Anne. and the Washington Office of the American Library Association (ALA). Less Access to Less Information by and about the U.S. Government. (1981 - 1998). Accessed at http://freegovinfo.info/library/lessaccess on October 12, 2010. Library Success Stories, IFC ALA Newsletter on Intellectual Freedom, November 2004. Accessed at https://members.ala.org/nif/v53n6/success_stories.html on October 11, 2010 Nevelow Mart, Susan. "Let the People Know the Facts: Can Government Information Removed from the Internet Be Reclaimed?" llrx.com. June 6, 2006. Accessed at http://www.llrx.com/features/reclaimed.htm on October 12, 2010. OMB Watch. "Information removed from agency websites." http://www.ombwatch.org/node/182#agency Ruffilo, Nick. "Metadata, Not E-Books, Can Save Publishing. O'Reilly Radar July 29, 2010 Accessed at http://radar.oreilly.com/2010/07/metadata-not-e-books-can-save.html on October 13, 2010. Continue reading →
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