If the Health Insurance Portability and Accountability Act of 1996 (HIPAA) was designed to give patients more control over their medical records in the electronic age, what does it say if twelve years later we decide we’d prefer Google to manage it for us?

In a recent article in the New York Times, it seems patients are eager to do just that:

The Google record … allows the user to send personal information, at the individual’s discretion, into the clinic record or to pull information from the clinic records into the Google personal file.

The move toward online control and access to personal health information changes the previously static, analog patient record into a dynamic set of data that serves multiple purposes. Our concepts of record management and documentation might have to change as well.

Posted by Erik Moore at 02:36 PM | Permalink | Comments (0) | Tagged as HIPAA | News | Perspectives |

Archives are often described as organic in nature and the material within the collections as containing organic-like relationships that archivists strive to preserve and to promote.

The organic metaphor fits nicely with the life-cycle model for records and records management: organic/inorganic; active/inactive; living/dead.

Management of electronic records and digital surrogates is casting a new light on an old problem with the organic/life-cycle metaphor: When does an active document become a record? Furthermore, does our own desire/ability to provide stewardship for a record determine whether or not it will become a part of the archival process? Are records outside of our traditional management process of less importance?

The organic/life-cycle model works best when there are clear beginnings and endings. It seeks to establish the birth, life, and death of a record at which point it becomes archival.

Many Australian archivists and some of their counterparts in Canada are promoting a continuum model to replace the life-cycle approach to records management. The records continuum model changes the organic metaphor from birth/death to ecological in its application. The information’s survival is not dependent upon our stewardship; instead, its use relies on the archivist’s ability to contextualize the information and manage it as a time/space object. The archivist’s job becomes less of a mission to preserve the information landscape and more of an undertaking to make ecological connections for our users and constituents.

To understand its practical application, a recent post by Lorcan Dempsey highlights the problem with life-cycle stewardship. Research, data, learning objects, and institutional records are less stewarded than other traditional material like books, serials, newspapers, and manuscripts. By creating better points of contact to these former materials that are intricately bound to the latter, Dempsey sees the potential for new unique resources previously out of reach for both the researcher and information professional. It emphasizes the continuing use of information, not its product.

Dempsey uses the University of Minnesota Digital Conservancy, an institutional repository, as an example of tool designed to provide context and access to information that does not fall neatly into a life-cycle model. This will also become more of a method to document and provide access to material that is part of the AHC History Project.

Posted by Erik Moore at 11:27 AM | Permalink | Comments (0) | Tagged as Perspectives |

The University of Minnesota has long been a leader in medical advances and technologies. Since the 1960s, the University has been synonymous with advances in transplant procedures. Prior to that, the medical school gave rise to corrective open heart procedures. Two of the men that were involved with this earlier era were C. Walton Lillehei and Richard Varco.

Lillehei’s research focused on maintaining normal oxygen levels within the blood while simultaneously operating on the heart by using an external pump and blood donor to by-pass the heart. Varco’s research along with John Lewis and Mansur Taufic investigated ways to decrease the need for oxygen by inducing hypothermia and creating a longer period necessary for by-passing the heart’s pumping action.

This picture captures a moment when these two men (Lillehei on the left, Varco on the right) are engaged in surgery. However, it does not take a heart surgeon to recognize a peculiarity in the photo. An avid viewer of Grey’s Anatomy or any other medical drama would be able to point out that the men should be wearing their masks and not letting them hang down from their necks.

The answer, however, is simple. Lillehei and Varco are performing surgery, but at the time of the photograph, the work they were doing was still in development. A majority of this work was done on laboratory dogs, as is the case in this picture.

The photograph is at first simple and then complicated. It carries the weight of the researchers and their efforts and the risks and sacrifices of the subjects (both human and canine) and reminds the viewer of the give and take nature of science.

In archival terms, photographs should elicit questions regarding not only their content (as I have done above) but also their intended purpose and potential consequences. In doing so, the archivist and researcher cannot work in a vacuum. The photograph needs to be placed in its original context by using the archival sources and historical references available.

Posted by Erik Moore at 10:25 AM | Permalink | Comments (0) | Tagged as Medical school | Perspectives | Photographs |

Several news outlets have reported on a new finding published in the New England Journal of Medicine (vol. 357, no. 4, July 26, 2007) regarding the spread of obesity in social groups. The article, "The Spread of Obesity in a Large Social Network over 32 Years," was written by Nicholas Christakis, MD, PhD, and James Fowler, PhD.

Their findings detailed the increased chances of an individual becoming obese if 1. a close friend became obese (57% increase); 2. an adult sibling became obese (40% increase); or, 3. a spouse became obese (37% increase). They also found that persons of the same gender also increased the chances of one obese person influencing another.

The data set used for the study comes from material collected for the Framingham Heart Study that began in 1948. A second cohort of the offspring of the first FHS was established in 1971 and a third cohort of offspring of the second generation began in 2002. The obesity study used only data from 5124 individuals in the second FHS cohort (1971). It tracked the social networks of the people by creating a database of information taken from handwritten administrative tracking sheets used to facilitate follow-ups with each participant. The tracking sheets included family names, relationships, addresses, and at least one close friend as a contact. This social information was not the basis for the Framingham study, but merely an administrative tool to be able to contact someone for their next appointment. The net result was 38,611 observable social networks among the participants.

This study demonstrates two interesting points in regards to archives. First, data collected for one reason can be creatively repurposed at a later time for another reason. This is one of the simplest arguments for retaining records in archives. Records are not kept merely to recreate the transactional nature of institutions and their activities, but instead provide for the use of information for other intentions.

The second point is the fragility of data. The information used to gather the findings was part of a three generation (and counting) study of heart disease. It was available because it was part of an active project that was well-documented. Due to the size of the FHS and its findings, it is likely that the data sets produced will be well-maintained after its conclusion at the National Library of Medicine or elsewhere. However, other data sets with the same potential to be repurposed into new studies are not always as lucky. And, it is likely it will become more precarious for them in the near future.

Issues concerning the privacy of patient and human subject information are part of the archival management process. The Privacy Rule regulations under HIPAA have done little to address the long-term preservation of PHI materials in archives. It is much easier for principle investigators, institutions, and archives to simply destroy the data as a sweeping act of safeguarding. True, there are few alternatives under the current regulations, but it comes at a cost of re-useable information and perhaps at the cost of our own health and well-being.

Posted by Erik Moore at 04:01 PM | Permalink | Comments (0) | Tagged as HIPAA | Perspectives |

Occasionally, it happens that the faculty papers or departmental records I make appointments to review are not the faculty member’s papers or the office’s records at all. Instead they are carefully crafted research collections or the archives of a professional society or another institution.

These collections within collections are often the result of a group or organization being unable to care for its records and as a substitute they are turned over to a well-meaning faculty member or administrator. Once that person retires or moves on to a different university, the records are left behind at an institution where there is no administrative connection and a dwindling provenance to their origin.

These materials can be just a few folders at the end of a box. They can also be multiple filing cabinets that could produce 18-20 linear feet of material.

It is easy to state that these materials fall outside the collecting scope for the project. However, the potential for loss becomes greater as fewer and fewer options become available for their long term storage and management. It highlights the utilitarian versus preservationist ethical dilemma in archival work. We preserve what we can, hopefully, in a sustainable method.

To paraphrase Robert Frost, "Whose records these are I think I know … But I have a mission to keep."

Posted by Erik Moore at 02:31 PM | Permalink | Comments (0) | Tagged as Donors | Perspectives |

On my way to Columbus, OH to present on the topic of privacy and medical records, I read several interesting pieces in The Economist (28 April 2007) in a special report on telecoms. One article was particularly interesting and timely given the subject of my presentation. It discussed the current/future applications of RFID (Radio Frequency Identification) technology in health care. Commonly used as Tattle-Tape(tm) to prevent theft from retail stores and libraries, the chips are now the size of bits of powder.

It noted that wireless technologies are not new in medical care – the pacemaker is a machine that can be adjusted wirelessly – but that the trend will be toward ubiquitous integration, including deep inside our own bodies. RFID chips will communicate with other devices in the examination room as well as outside of the doctor’s office to provide a 24/7 health monitoring program. Our cell phones will be the go-between for our body and our physician. We could be blissfully unaware of any changes to our health when our phone rings to notify us we are scheduled for a visit to the family doctor or even providing directions to the nearest emergency room for an evaluation.

But notification is not the only purpose RFID chips and other similar technologies can provide. Smart chips planted near a tumor can wirelessly power up to burn any new cancer cell growth in a particular area. Chips in the digestive tract can measure the absorption of medication and alert the pharmacist to needed changes in dosage and strength.

Today, the question is how do we protect privacy while providing access to information that can move medical advances forward and allow us to better understand historic patterns in public health? In the coming years the question will shift to how do we protect privacy when there is no separation of the patient and their medical record? What happens when a person is not only the subject of study but also the document itself? What will the medical record look like? What exactly will come to the archives?

Currently, HIPAA and the Privacy Rule are trying to balance the issues of privacy protection and research use. Formulated during the rise of the electronic medical record, the legislation and regulation may become as quickly outdated as Zip drives. It will be seen as a solution based on what the needs were, not what the needs will be. The act also presumes a government’s responsibility to its citizens to aid in privacy protection. Yet, in a wirelessly networked world the government-citizen relationship is blurred and the emphasis on geographic location will wane as the demand for information and the privileges afforded by technology will rise.

Perhaps the very technology that scuttles our notion of a medical record will be the solution to privacy and access. Long vilified as a potential breach to privacy, the RFID and similar technologies could be the literal key to access. Those with permission to review medical records or to provide access to others will be the only ones able to gain access to the information. Individuals will be able to opt-in to have their information included in studies or databanks depending on their preferences without the need for patient consent forms each time a researcher submits a proposal to a review board. Perhaps the technology will ultimately give the individual what the HIPAA legislation cannot, immediate control over who can and cannot have access to their medical history.

And of course, there will be a setting to send it all to the archives.

Posted by Erik Moore at 03:19 PM | Permalink | Comments (0) | Tagged as HIPAA | Perspectives |

Below are the remarks I delivered as part of the introductions at the AHC guest lecture by Gretchen Krueger. The event doubled as an opportunity to formally launch the AHC History Project.

Academic Health Center History Project Launch

February 28, 2007

Welcome. I appreciate your interest in tonight’s event and would like to take a few moments to elaborate on the project that I am working on.

The Academic Health Center History Project is a unique collaborative effort between the Academic Health Center and the University of Minnesota Libraries to ensure that the rich history of the Academic Health Center is preserved within the University Archives.

The goals of the project are to identify, collect, and provide access to the institutional and historical documentation of the Academic Health Center, its six schools and colleges, and its interdisciplinary centers at the University of Minnesota. The outcome is to ensure that this valuable documentation is preserved over the long term and made permanently accessible for scholarly and administrative uses in the University Archives.

However, where I’d really like to begin is by quoting Dr. Cerra from his State of the AHC address delivered in this auditorium last month. Speaking about ways to support current research, Dr. Cerra reminded the audience that “There is a repository of wisdom in our faculty... We need the wisdom of those faculty and we don’t really have a good system for tapping it and using it.” I understand this wisdom to be broader than the traditional model of publication. It is a wisdom that comes from experience and personal interrelations.

I would argue that tonight’s topic is a case in point. It is hard to find a biographical note on Dr. Kennedy that does not refer to him as "the father of medical oncology." He was a "repository of wisdom."

In 1999, Dr. Kennedy’s essay in The Lancet, "Origin and Evolution of Medical Oncology" detailed the history of the medical oncologist’s role in patient care. Dr. Kennedy lamented the lack of interest that oncologists-in-training had in its historical origins, commenting, "I’ve spent 47 years in an academic environment, and I know that many young oncologists are not interested in the history of oncology. They either don’t have the time or don’t have the interest to trace the origins, and some of them are reinventing the wheel."

Dr. Kennedy was well aware of the repository of wisdom faculty could be and he made great progress in being a source of information for others.

But I hasten to add that this project is not about faculty alone. The administrative units of the AHC, its schools and colleges, and centers are all repositories of wisdom that need tapped as well. A better institutional understanding comes from a well-documented institutional history. Without which, there is little or no context for the work being done. It is not only researchers who are prone to reinvent the wheel. We re-visit familiar ideas in our strategic planning, curriculum design, and clinical operations year after year.

Dr. Kennedy once said, "My favorite expression is that medical oncology is the practice of internal medicine, but all the patients happen to have cancer." Dr. Kennedy believed in a comprehensive care approach. Why combat the cancer if the onset of additional health issues were left unchecked?

It is like sticking your thumb in a hole of a cracked dike and ignoring the mounting pressure of water on the other side.

To date, the attempts to stop the loss of history at the AHC have been something closer to the thumb-in-the-hole method while the mounting pressure of lost history grew.

With the AHC History Project we are gathering partners together to stop the loss. As you have heard there is an institutional commitment from the AHC and the University Libraries to preserve this history and make sure there is access to it.

But on the other side of the table are you: the faculty, administrators, department heads, administrative staff, students, and family. You are part of this project as well. You are the people who understand the history by living through it. We will need your help at locating it and bringing it out into the light so that it can be preserved and others can have access to it. You are part of our insurance against the dike breaking.

Thank you for coming tonight. Your interest in the AHC’s history demonstrates that we have a great foundation for us to develop this project and see the repository of wisdom of the Academic Health Center built.

Thank you.

Posted by Erik Moore at 08:54 AM | Permalink | Comments (0) | Tagged as Events | Perspectives | Project admin |

Last Wednesday, January 31, 2007, Dr. Frank Cerra, Senior Vice President for Health Sciences, delivered his annual State of the AHC address (streaming video available). Several pieces of his presentation struck a chord with me and demonstrate relationships with the overall goals of this project. I’d like to discuss one of those pieces below.

During his explanation of his vision for research, he listed the following bullet point under the topic of concerns & issues.

• We need to value and use wisdom of existing faculty/staff

What he said was:

The final concern I heard in this area was find a better way to value and utilize faculty wisdom. There is a repository of wisdom in our faculty... We need the wisdom of those faculty and we don’t really have a good system for tapping it and using it. It's part of a dialogue that’s on going and I think we need to really learn how to do this. (35:21, streaming video)

I think this is a key approach to better help faculty and their departments understand the importance of their work and its relevance beyond publication. Lecture notes, correspondence, presentations, committee work, all these facets of a faculty member’s life represent the whole of their repository of wisdom. Believing that a life-time career can be easily measured in the publications left behind paints a false portrait of a faculty member’s work. It is linear and flat. It gives the impression that their work began with Point A and finished at Point B.

We all know a professional career is not that simple. It is full of false starts and the abandonment of some research questions to pursue others. It is dynamic and multileveled. It is not a portrait done by a connect-the-dots strategy, but one done in pointillism. What may seem random dots of color up close, in fact, come into focus as you step away from the canvas.

Archives can act as part of the solution for the concerns & issues raised in this vision for research. They can act not only as a source for information, but also as a model for how to organize the repository of wisdom being created at that moment.

Posted by Erik Moore at 12:23 PM | Permalink | Comments (0) | Tagged as Events | Perspectives |

I am coming closer to terms with the speed at which health science materials travel. The urgency for new information and the rapid turnover of theories, studies, and reports in the professional literature creates an environment with little regard for historical perspectives. Who has time to look at all this “old stuff” when the review of incoming material is beyond the limitations of any individual. Aggregators and literature review services are the only means available for health science professionals to be aware of the enormous amount of information passing through their periphery.

The speed of information coupled with the space limitations of departments and divisions operating in facilities designed in an era that could not anticipate their current needs creates a hazardous environment for institutional documentation and the personal papers of faculty. The time/space pressure results in a clean sweep after the retirement or death of faculty and administrators.

The loss is happening in real time. On any given day I can walk through the various buildings and see material piled next to trash containers or left for janitors outside of office doors. Or, as in a recent case, it comes to me through an email notifying me that it is all gone. Usually, it is tendered with a "wish I had known..." or "I didn’t realize someone would want this old stuff."

Obviously, I cannot change the established environment, but, hopefully through a few upcoming events, word of the project and the value of the material can begin to seep into the consciousness of those I am working to document.

Posted by Erik Moore at 12:58 PM | Permalink | Comments (0) | Tagged as Perspectives |

I recently stumbled across the proceedings for the 1993 Conference on Expressions of Caring in Nursing: Exploring Our Environmental Connections (ed. Eleanor Schuster & Carolyn Brown, NY: National League for Nursing Press, 1994). I thumbed through several of the articles for two primary purposes. First, I am enjoying becoming more connected to health sciences literature. It helps me better understand the materials I work with as well as connect to the people I meet. Second, I was curious to see the connections depicted that draw the field of nursing closer to environmental studies. As you may recall, I previously mentioned my own interest in examining archives as a single field among many interested in the long-term use and access to rare and unique resources as is the case in environmental protection.

The preface to the first chapter states

The phrase domain of nursing knowledge calls forth old images of ownership, territoriality, and control. We use the word domain in the sense of laying claim to an area of knowledge development for nursing. (p. 1)

The semantics of ownership and control are present in environmental literature. The shift in language from land management to land stewardship parallels the shift in nursing knowledge from a domain of knowledge ownership to a domain of knowledge growth.

As for archives, a recent article by Joel Wurl (Archival Issues 29, 2005) echoes this shift in language and, thus, perception. Wurl writes

In the custodial approach to archives, property is relinquished… material is now owned by the repository. A stewardship ethos… is characterized by partnership and continuity of association… jointly held and invested in by the archive and the community of origin. (p. 72)

In each of the three fields, nursing, environmental protection, and archives, a clear break with past paradigms of ownership and control are made and replaced with growth and partnerships.

When discussing incorporating an environmental awareness into nursing, Dorothy Kleffel recommended

(a) making the community and the broader environment our nursing client, (b) redirecting our nursing activities to the macro-level environment, and (c) moving the profession from oppression to empowerment. (p. 11)

I find all three suggestions applicable to archives as well. If we document human activities and the broader environment then archivists follow the suggestion of Candace Loewen (Archivaria 33, 1991-92) to be "survival-oriented," meaning we document "records of value to humans and to the planet as a whole." Second, archivists are becoming more aware of provenance and appraisal issues at the macro level and are engaging records at their creation, not just at their deposit. A macro level approach is also becoming a part of our processing and description activities. Finally, the third point is again evident in Wurl’s discussion of stewardship of a community’s resources rather than control.

So what is the ultimate connection between nursing, environmental protection, and archives? All are primarily interested in the long-term survival and improvement of the communities they serve. And by doing so, cross over to the other fields with a measure of support as well.

Posted by Erik Moore at 08:54 AM | Permalink | Comments (0) | Tagged as MPLP | Nursing | Perspectives |

I’ve often commented that archival work is a morbid profession. I think this every time I see work study students combing the obituaries for a notice to close out a clippings file or contact information for the next of kin as a collection lead.

Yet, there is another type of loss we deal with from time to time and it is a less than funny matter. Even though a person may not be nearing the end of their life, they may be nearing the end of their memory. Memory loss in a donor can be a confusing and difficult area for the archivist to navigate. Repeating conversations during each contact while knowing the donor is becoming less aware of the ultimate purpose of the discussion is an area we are not equipped through our training to handle. It also becomes an ethical issue. The archivist needs to be able to determine when a donor is no longer able to consent to the depositing of their materials and whether or not we should proceed with the acquisition until ownership and transfer issues are resolved.

I’d suggest we need to look to the literature on aging in the medical and social work fields to understand how we can best react to the changing needs of those we are trying to document.

Posted by Erik Moore at 11:57 AM | Permalink | Comments (0) | Tagged as Donors | Perspectives |

I’ve always been somewhat fascinated with the terminology used in archives and the inherent problems and contradictions it can cause when those same terms are crossed with another field or discipline. Of personal interest are such terms as “preservation” and “conservation” and how these terms have very practical applications in archival work and also have implications in archival theory. Comparing and contrasting these definitions with their use in environmental protection sets up archives as a single field among many interested in the long-term use and access to rare and unique resources. That, however, can be the topic of a different post.

The Glossary of Archival and Records Terminology addresses these issues of archival lexicon in an introductory essay. Yet, the reality can sometimes become all too apparent when the words used and the confusion over their definitions means a loss to the archival record.

Today, I’d like to address the term “papers.”

The Glossary provides these definitions for words that are at times used interchangeably.

Papers: 1. A collection. – 2. A collection of personal or family documents; personal papers. – 3. Government • Records indicating an individual's identity or status.

Personal papers: 1. Documents created, acquired, or received by an individual in the course of his or her affairs and preserved in their original order (if such order exists). – 2. Nonofficial documents kept by an individual at a place of work.

Manuscript: 1. A handwritten document. – 2. An unpublished document. – 3. An author's draft of a book, article, or other work submitted for publication.

When trying to collect the papers of those in higher education, I believe archivists are competing with terminology already ingrained in the population by the publishing world. Paper equals article. Manuscript equals a pre-publication work.

Why the interest in papers? Today I learned that nearly 12 boxes of correspondence and related work materials for a prominent individual in the veterinary sciences were recently destroyed (this is unrelated to another recent loss in the vet sciences). In this specific case, it was believed that papers referred to the published work of the individual. A reasonable interpretation given the publishing environment academics work in. Is “personal papers” that much more clear? Not likely. Manuscripts? Again, the connection to publication is forefront with most.

So, the education continues. Both for the community I am collecting from on what archives are as well as for myself on how that community perceives the work we do.

Posted by Erik Moore at 02:40 PM | Permalink | Comments (0) | Tagged as Lexicon | Perspectives |

When I am asked to explain the project or describe what I do, I often respond by describing myself as a field archivist. My job is to connect the records of the Academic Health Center to University Archives. The senior vice president’s office, the six schools and colleges (medical, nursing, pharmacy, public health, dentistry and veterinary), and the independent centers are the primary units that make up the AHC and the territory I cover. The focus of my search for materials centers on the formation of the AHC in 1970 when the Board of Regents appointed Dr. Lyle French as the vice president for health sciences and the events leading to this decision. It also focuses on what has happened since, up to present day.

I have work space at University Archives, but also a “field office” within the AHC. Being “in the field” has facilitated making connections fast. Word of the project is quickly spreading throughout the AHC and I’ve been contacted by numerous faculty and staff with tips on the location of a cache of materials they think are particularly interesting or with questions regarding what is considered archival or how best to manage their in house resource files.

Working as a field archivist also helps to educate and create an environment within the AHC that sees the University Archives as a partner and understand the archives as a place where its sole mission is to manage the historical documentation and information of all units of the university.

Posted by Erik Moore at 10:18 AM | Permalink | Comments (0) | Tagged as Perspectives |