Your chance to weigh in on proposed U.S. HIPAA rule changes

A few weeks ago, the U.S. Department of Health and Human Services published a series of proposed changes to the Privacy, Security, and Enforcement Rules of the Health Insurance Portability and Accountability Act (HIPAA), which governs access to medical records and personal health information.

One of these regulatory changes centers upon access to data concerning deceased persons and ought to be of great interest to archivists, historians of medicine and social welfare policy, and genealogists. As archivists Stephen Novak and Nancy McCall testified at a 2005 hearing held by the Department of Health and Human Services, National Committee on Vital and Health Statistics, Sub-Committee on Privacy and Confidentiality, HIPAA's imposition of perpetual access restrictions upon "personal health information" poses myriad challenges for archivists and researchers alike.

The following proposed change is intended to address these concerns:

1. Section 164.502(f)--Period of Protection for Decedent Information

Section 164.502(f) requires covered entities to protect the privacy of a decedent's protected health information generally in the same manner and to the same extent that is required for the protected health information of living individuals. Thus, if an authorization is required for the use or disclosure of protected health information, a covered entity may use or disclose a decedent's protected health information in that situation only if the covered entity obtains an authorization from the decedent's personal representative. The personal representative for a decedent is the executor, administrator, or other person who has authority under applicable law to act on behalf of the decedent or the decedent's estate. The Department has heard a number of concerns since the publication of the Privacy Rule that it can be difficult to locate a personal representative to authorize the use or disclosure of the decedent's protected health information, particularly after an estate is closed. Furthermore, archivists, biographers and historians have expressed frustration regarding the lack of access to ancient or old records of historical value held by covered entities, even when there are likely few remaining individuals concerned with the privacy of such information. Archives and libraries may hold medical records that are centuries old. Furthermore, fragments of health information may be found throughout all types of archival holdings, such as correspondence files, diaries, and photograph collections, that are also in some cases centuries old. Currently, to the extent such information is maintained by a covered entity, it is subject to the Privacy Rule. For example, currently the Privacy Rule would apply in the same manner to the casebook of a 19th century physician as it would to the medical records of current patients of a physician.

Accordingly, we propose to amend Sec. 164.502(f) to require a covered entity to comply with the requirements of the Privacy Rule with regard to the protected health information of a deceased individual for a period of 50 years following the date of death. We also propose to modify the definition of ``protected health information'' at Sec. 160.103 to make clear that the individually identifiable health information of a person who has been deceased for more than 50 years is not protected health information under the Privacy Rule. We believe that fifty years is an appropriate time span, because by approximately covering the span of two generations we believe it will both protect the privacy interests of most, if not all, living relatives, or other affected individuals, and it reflects the difficulty of obtaining authorizations from personal representatives as time passes. A fifty- year period of protection also was suggested at a prior National Committee for Vital and Health Statistics (NCVHS) (the public advisory committee which advises the Secretary on the implementation of the Administrative Simplification provisions of HIPAA, among other issues) meeting, at which committee members heard testimony from archivists regarding the problems associated with applying the Privacy Rule to very old records. See http://ncvhs.hhs.gov/050111mn.htm. We request public comment on the appropriateness of this time period.

My employer holds medical records and will, in all likelihood, take an official position on these proposed changes. My views will be reflected in my employer's comment (I'm not being facetious -- I'm involved in the discussion), but I think it's really important for individuals to speak out as well. If you are an archivist or records manager, a scholar or genealogist seeking access to older medical records, or simply have an interest in striking a balance between personal privacy and access to records, please take the time to look over the proposed changes in their entirety (go to http://www.regulations.gov/search/Regs/home.html#home, check "Open for Comment/Submission," and search for "HIPAA"), think through their implications, and submit a comment outlining your position. Comments will be accepted until 13 September 2010.

The impact of archival records on American Buddhism

Today, the New York Times published an article by Mark Oppenheimer about American Buddhists' efforts to come to grips with revelations that some of their spiritual leaders have been romantically and sexually involved with their adult students. The source of these some of these revelations: the personal papers of American Buddhist leader Robert Aitken, which the University of Hawai'i at Mānoa's Special Research Collections staff unsealed in 2008.

The unsealed papers included files in which Aitken documented the sexual relationships that Eido Shimano, who is now the spiritual leader of New York's Zen Studies Society, had with adult female students between the mid-1960s and the early 2000s.

Oppenheimer notes that the debates about the conduct of Shimano and other Buddhist spiritual teachers are, for a variety of reasons, distinctively American. Digitized copies of Aitken's Shimano files found their way onto the Internet and engendered considerable discussion in the blogosphere. The American news media, which played a key role in publicizing scandals that have rocked other faith communities, is now on the lookout for clerical impropriety. Moreover, American Buddhist spiritual communities generally consist of both men and women, and Asian Buddhist leaders accustomed to working only with male students may have been unprepared for the temptations that awaited them in the United States.

In response to these and other developments, American Buddhist attitudes about student-teacher relationships, which were once seen as uniquely privileged and private, are changing: in July, revelations concerning a recent relationship between Shimano and a female student forced Shimano and his wife to depart from the board of the Zen Studies Society, which has drafted a new set of ethical guidelines for its leaders and members.

In the absence of the Web, the blogosphere that the Web made possible, and news media outlets primed to expose clerical sexual misconduct, the information in Aitken's files might have been unknown to anyone except a handful of academics and Buddhists interested in Aitken's life and work. However, in our Webby, bloggy, clerical-impropriety-is-big-news age, the information in Aitken's papers has been widely disseminated and has had significant impact.

I have the feeling that in the years to come, we're going to see more and more instances in which the Web and, in particular, Web 2.0, gives the information contained within archival records explosive force. By and large, this is a very good thing: as those of us partial to freedom of information laws are fond of noting, sunlight really is the best disinfectant. However, I suspect that it's also going to pose some challenges for the archival profession. Those of us who work with manuscript collections may find that some donors want to restrict access to their papers for increasingly lengthy periods of time, and those of us who work with government records may find that creators are less and less inclined to document their activities completely or to transfer their records to the archives.

New York State Archives Partnership Trust to honor Richard Dreyfuss in Albany, New York, 28 September 2010

The New York State Archives Partnership Trust, Greenberg Traurig, the Albany Times Union and History^TM are sponsoring an engaging evening of conversation between Academy Award^®-winning actor and 2010 Empire State Archives and History award honoree Richard Dreyfuss and nationally prominent Lincoln scholar Harold Holzer as they talk about Mr. Dreyfuss’ life, work and passion for history.

Many people are familiar with Dreyfuss's storied acting career, but most of them aren't aware of the depth of his passion for history and archives. In May 2004, Dreyfuss and Holzer took part in a similar Archives Partnership Trust-sponsored discussion concerning Ulysses S. Grant, and everyone in the audience was stunned by the depth of Dreyfuss's knowledge of Grant's autobiography and all of the recent scholarship concerning his military and Presidential careers and his personal life. Dreyfuss fielded almost all of the audience questions -- none of which concerned his acting career -- and did so with aplomb and wit. It was a superb event, and I'm really looking forward to seeing Dreyfuss receive a well-deserved award and engage in another discussion with his friend Holzer, who is a first-rate historian.

If you're going to be in Albany, New York on 28 September 2010, please consider attending this event, which will be held at 7:30 PM at The Egg (also known as the Nelson A. Rockefeller Empire State Performing Arts Center), which is part of the Empire State Plaza complex. Tickets are $10.00 per person (plus handling fees). To make reservations, simply call The Egg Box Office at (518) 473-1845.

You may also wish to attend a special reception honoring Richard Dreyfuss that will be held at The Egg from 5:30-7:00 PM on 28 September. Tickets for the reception are $50.00 per person for Archives Partnership Trust members, $65.00 per person for those who wish to become Trust members at the time they purchase their tickets, and $75.00 for non-members who wish to attend the reception, and everyone who purchases a ticket to the reception will receive a complimentary ticket to the program itself. All proceeds from the reception will support the programs of the New York State Archives and the Archives Partnership Trust.

Reservations for the reception must be made by September 22, 2010, and reservations are confirmed when payment is received. No refunds are available. You may purchase reception tickets online or by calling the Archives Partnership Trust office at 518-486-9349. The Trust accepts Visa, MasterCard, AMEX and Discover. Personal checks can be made out to the Archives Partnership Trust and brought or mailed to to the Archives Partnership Trust, Cultural Education Center , Suite 9C49, Albany , NY 12230.

CMSWire SAA 2010 recaps

Six of the forty-six Louis Saint-Gaudens centurions standing guard over the Main Hall of Union Station, Washington, DC, 15 August 2010, 11:42 AM.

FYI, Mimi Dionne has written excellent recaps of four sessions held at the 2010 joint CoSA-NAGARA-SAA meeting for CMSWire magazine:

• #saa10: Is Structured Data Essential for Effective Archival and Discovery? (Session 102, Structured Data Is Essential for Effective Archival Description and Discovery: True or False?
• #saa10: The Cloud - Opportunity or Risk for Records Managers? (Session 202, Content in the Cloud: Opportunity or Risk for Records Managers?)
  
• E-Discovery and Records Professionals: Overcoming the Digital Tsunami #saa10 (Session 402, E-Discovery and Records Professionals: Overcoming the Digital Tsunami)
  
• #saa10: Archival Preservation Environment Isn't Just a Bit of Storage (Session 501, Distributed Archival Custodial and Preservation Environments (DCAPE) Project: Status Report and Demonstration)

SAA 2010

View from the sixth floor, Washington Marriott Wardman Park, 14 August 2010, 6:55 AM. Washington National Cathedral is in the background.

The 2010 joint meeting of the Council of State Archivists (CoSA), the National Association of Government Archivists and Records Administrators (NAGARA), and the Society of American Archivists (SAA) has come to an end. Between working on my own presentation (which went pretty well) and being a bit under the weather on Thursday, I haven't had the chance to post anything here. Some of this year's presentations are freely available on the SAA Web site, more (my own included) will be added to the site shortly, and people have been tweeting up a storm about the meeting, so I'm not going to post any detailed session recaps this year. Instead, I'm going to offer up some of the most interesting insights and snippets of information I picked up at this year's meeting:

• Seth Shaw (Duke University): Archivists confronted with unfamiliar materials have an instinctive tendency to gravitate toward item-level description. Photography is an excellent example of this behavior, and it wasn’t until we were deluged with photographic materials that we began moving away from item-level description. Electronic records are another example, and we need to return to archival principles when dealing with them. (Session 104, Taking Scale Seriously: Practical Metadata Strategies for Very Large Digital Collections)

• John MacDonald (Information Management Consulting and Education): We need people who understand the evolving organizational landscape and its impact on recordkeeping and who know how to position themselves to support operational and strategic goals and priorities and individual needs of business lines and the enterprise, how to articulate records issues in business terms, and how to be seen as their organization’s “go-to” person for all records issues. How do we find these people? Do what human resources experts do: define the nature of records work, identify the knowledge, skills, and abilities needed to do the work, develop competency profiles, assess the gap between those competency profiles and existing competencies, build recruitment strategies, develop training and education strategies, etc. (Session 302, So, Like, Byte Me: A Critical Response by Records Professionals to Born-Digital Records)

• Adrian Cunningham (National Archives of Australia): The International Council of Archives is working to reconcile the varied national electronic recordkeeping standards (e.g., DOD 5015.2) , and the results of this project have been been submitted for fast-track approval by ISO, the international standards body. (Session 302, So, Like, Byte Me: A Critical Response by Records Professionals to Born-Digital Records)

• Lisa Weber (National Archives and Records Administration): The Buddhist faith holds that life means suffering, that the origin of suffering is attachment, and that the cessation of suffering is attainable. Records professionals suffer because they are attached to the concept of preservation. However, all records are decaying -- sometimes slowly, and sometimes quickly. We need to think of digital preservation as a series of handoffs to the future and avoid falling into the trap of thinking that everything is too difficult or that we need to build perfect systems; the middle path -- neutral, upright, and unbiased -- is what we should seek. We need to act, observe, and learn, then act, observe, and learn. (Session 302, So, Like, Byte Me: A Critical Response by Records Professionals to Born-Digital Records)

• Victoria Lemieux (University of British Columbia): Traditionally, keyword searching and linear review has been the accepted approach to e-discovery. However, this approach is not scalable. Attorneys and others have been exploring a number of alternatives, including visual analysis, the science of analytic reasoning facilitated by interactive visual interfaces. It facilitates processing of massive sets of data, produces quick answers, and facilitates discovery of the unexpected. It originated in the scientific community and has moved into business intelligence, fraud detection, and other fields, and now it’s moving into e-discovery -- particularly when e-mail is involved. To date, a lot of visual analysis focuses on social networks, but it can also be used to create cluster representations of content. Visual analysis isn't perfect and has yet to be tested in court, but research suggests that doing a “first pass” using visual analysis and then doing keyword searching and linear review is a highly effective approach. (Session 402, E-Discovery and Records Professionals: Overcoming the Digital Tsunami)

• Jason Baron (U.S. National Archives and Records Administration): Researchers have discovered that keyword and Boolean searches fail to retrieve substantial numbers of documents responsive to e-discovery requests. (Session 402, E-Discovery and Records Professionals: Overcoming the Digital Tsunami)

• Chien-Yi Hou (University of North Carolina, Chapel Hill) demonstrated a prototype of the Distributed Archival Custodial and Preservation Environments (DCAPE) system. He used it to detect a virus in a test batch of records submitted to the system, move files from his laptop to a storage location in North Carolina, and did some other cool stuff. (Session 501, Distributed Archival Custodial and Preservation Environments (DCAPE) Project: Status Report and Demonstration)
  

• Juan Williams's son once asked him, "What's the biggest building in Washington?" Wiliams named the Capital and several other buildings, but his son kept telling him he was wrong. After Williams exasperatedly gave up, his son told him the answer: "The National Archives, because that's where all the stories are." (Plenary III)

The following caught my eye because a) New York City’s Grand Central Terminal is a marvel and b) I’m writing this post on a train to Washington, DC that is, at this moment, pulling out of the city’s charmless “new” Pennsylvania Station.

Grand Central Terminal will celebrate its 100th anniversary in February 2013, and in honor of the occasion the New York Transit Museum is organizing an exhibit that will occupy the station’s Vanderbilt Hall during its centennial month. According to the New York Times’ City Room blog, Transit Museum archivist Carey Stumm is looking for donations (preferred) or loans (also acceptable) of, among other things:

• Uniforms, caps, and badges worn by employees of the New York Central, the Metro-North, and other railroads associated with the station
• Ashtrays, coat hooks, clocks, baggage carts, and gate curtains associated with the station
• Home movies and amateur photographs
• Old railway timetables and tickets
• Matchbooks and menus from the station’s shops and restaurants
• Posters, advertisements, and other materials associated with campaign speeches, concerts, and other public events that took place at the station

If you have any materials that might be of interest to Stumm and the other exhibit planners, photograph your item or items, briefly describe each item and its origins and current location, and send your photos and descriptions to carey.stumm[at]nyct.com. The exhibit planners have -- bless them -- promised to respond to every message they get.

Wurts Brothers, photographer. 101 East 42nd Street-Park Avenue [Grand Central Terminal], ca. 1920. New York Public Library, Stephen A. Schwartzman Building, Irma and Paul Milstein Divison of United State History, Local History and Genealogy. Digital ID: 1558218. Image courtesy of the New York Public Library.

The beauty above is, thankfully, still with us.

Pennsylvania Railroad Station, Part of General Waiting Room, New York City, July 1938 [?] New York (State). Education Dept. Division of Visual Instruction. Instructional Lantern Slides, 1911-1925. Series A3045-78. Lantern slide DnNP4. Image courtesy of the New York State Archives.

Sadly, this gem is not. Back in the 1960s, a bunch of powerful and profit-hungry people decided that the above station should be replaced with the dank, low-ceilinged mediocrity pictured below. The only truly good thing about the “improved” Penn Station is that its opening led to a public outcry against plans to replace the existing Grand Central Terminal with a similarly uninspiring facility -- and against a host of other efforts to demolish architectural treasures in the name of progress and efficiency. Instead of being lost to history, Grand Central Terminal is poised to enter its second century with a flourish.

Pennsylvania Station, New York City, 10 August 2010.

SAA Security Roundtable

I'm in the throes of packing, cleaning, and otherwise preparing to board a train to Washington, DC tomorrow morning, but opted to take a quick break to pass along the following news . . . .

The Society of American Archivists' Security Roundtable is meeting Wednesday, August 12 from 5:30-7:30 PM at the Marriott Wardman Park in Washington, DC. I deeply regret that my schedule won't permit me to attend this meeting, because it promises to be great: Mitch Yockelson and Larry Evangelista of the U.S. National Archives and Records Administration's Archival Recovery Team (which is on Facebook) and Jennifer Schaffner of OCLC Research will discuss "Transparency and Theft Response and Recovery." They will discuss:

• Communicating with the archival community, dealers, and collectors
• Using social media to convey news about thefts and security matters
• Using dedicated electronic tools (e.g., MissingMaterials.org) to report missing records, books, and other materials
  

If you want to know more about how the Archival Recovery Team tracks down stolen federal government records, earlier today the Los Angeles Times published a really cool article highlighting its work. Even if you can't make to the meeting, it's absolutely worth checking out.

(A big tip o' the hat to my colleague Brittany Turner, who found this article earlier today!)

The week before SAA . . .

. . . is always hectic, and as a result there probably won't be a lot of activity around here until the 2010 joint annual meeting of the Council of State Archivists, the National Association of Government Archivists and Records Administrators, and the Society of American Archivists gets underway next week. I'm in the throes of readying my slides, battening down the hatches at the office, trying to figure out what to pack, and beating back the domestic clutter so my housesitting friend won't have to live amidst my mishegas.

In the meantime, I hope you enjoy the latest group of photos that my awesome colleagues at the New York State Archives have posted on Flickr. All of them are of the city of Saratoga Springs, which has a storied history and a surplus of loveliness. I'm particularly fond of this image of the elegant State Drink Hall (i.e., mineral water bar), which was taken in August 1908 (i.e., 102 years ago). Maybe it's just me, but the State Drink Hall looks like an upscale blend of Rick's Café Américain, Café du Monde, and the café that appears 18 seconds into this Duran Duran video.

Illinois Electronic Records Act

Well, this is interesting: on 28 July, Illinois Governor Pat Quinn signed a new state Electronic Records Act into law. This new law specifies that electronic records have "the same force and effect" as records created in other formats and that they are subject to the state's Freedom of Information law and encourages state agencies to create and transmit electronic records provided that doing so does not "jeopardize the efficient operation of state government."

Most significantly, it establishes a new Electronic Records Advisory Board composed of the following people (or their designees):

• State Treasurer
• Secretary of State (the Illinois State Archives is part of the Office of Secretary of State)
• Governor
• Attorney General
• State Comptroller
• Director of Central Management Services
• President of the University of Illinois
• Director of the Bureau of Communication and Computer Services, Department of Central Management Services
• Director of the State Archives
• Secretary of Transportation

The law charges the board with producing, no later than 1 July 2010, a report "recommending policies, guidelines and best practices" relating to the following electronic records management issues:

• Long-term maintenance of electronic records
• Management of electronic files in a networked environment
• Recordkeeping issues in information system development
• Log file management
• Management and preservation of Web-based records
• Retention periods for electronic records

Once the board's report is finished, the Secretary of State must post the resulting policies, guidelines, and best practices on its Web site and distribute them to all Illinois state agencies. Within six months of the report's completion, agencies must review the board's "recommendations and take all possible steps consistent with those recommendations to enhance the use of electronic means of creating, transmitting, and retaining State records."

There's a lot to like about this legislation. I'm a big believer in the value of interagency collaboration and cooperation (I helped to write a report recommending that a similar committee be established in New York State), and Illinois's Electronic Records Advisory Board will get a lot more attention and respect than any effort led solely by the Illinois State Archives. Agencies are going to find it pretty difficult to disregard the combined guidance of the Governor's Office, the state IT agency, the State Archives, the Attorney General, and the state's chief financial officials, and as a result the state is likely going to see some real improvements in the management of its electronic records.

However, I am dismayed by a couple of provisions embedded within the law; when reading what follows, please bear in mind that I have no knowledge of the developments that led to its passage and that there may be really good reasons why it is written as it is. First, the board has been given only 11 months to produce its report and agencies have only 6 months to review and implement the board's recommendations. The issues that the board must address will require extensive research and solicitation of input from state agencies and, in all likelihood, people who do business with the state and the general public (the law encourages e-mail transmission of information formerly sent via U.S. Mail). As a result, the board's members are going to have to work at a breakneck pace and, in all likelihood, devote less attention to some key issues than they would otherwise. Agencies running large or legacy information systems will likely find it very difficult to implement some recommendations within the allotted timeframe. In my humble opinion, it's better to move a little more slowly and do things properly.

Second, the board will cease to exist after it finishes producing the report. Electronic records issues are not "fix-them-once-and-then-forget-them" concerns, and, in my view, ongoing cross-agency communication and collaboration is imperative. Giving the board a couple of years to produce its recommendations (or a series of recommendations released at regular intervals) and then a year or so to answer questions from agencies and then produce a follow-up report outlining successes, lessons learned, and emerging areas of concern might have been a better alternative. However, Illinois has a multi-agency State Records Commission with regulatory powers, and the overlap between the membership of this commission and that of the Electronic Records Advisory Board is considerable; as a result, the board's dissolution may be less of a problem than it would otherwise.

Despite these concerns, I think that this legislation is a really promising first step. Even if the Electronic Records Advisory Board isn't reconstituted after 1 July 2011, its report will almost certainly produce tangible improvements in the state's management of electronic records. Moreover, personal experience suggests that the shared struggle to produce a major report in a very short amount of time will pave the way for ongoing communication and informal collaboration between board members.

Seeing how this legislation pans out is going to be interesting. I'm really looking forward to reading the board's final report and seeing how agencies implement its recommendations. I also hope that other states (e.g., New York) enact similar laws.