You ought to be in pictures

img0024.jpgA recent acquisition comes from the Academic Health Center’s Office of Communications. The 25 linear inch collection contains the photographs, contact sheets, and some negatives for the visual images used during the production of Health Sciences, a former news magazine of the AHC published from 1981-1995.

This collection is particularly useful in the fact that all of the images have been published. It is a common event to have a researcher trying to locate a photograph they saw elsewhere. This collection will hopefully act as a point of reference for some of those cases. The photographs are grouped according to the issue in which they were used. In most cases, a copy of the publication is included in the folder. Although the individual photographs are not well labeled, the context in which they were filed provides easily available identification information.

Unfortunately, one caveat of the collection is the undetermined copyright of the photographs. Although today’s photographic services contract includes the stipulation that the photographs and their copyright will belong to the University, it is unknown if that was the understanding when many of these pictures were taken.

Health sciences planning report

As the AHC and the University of Minnesota continue to expand and develop within the confines of a limited space, take a look back to 1968 and see the perceived growth and expansion of the health sciences on campus.

The Planning Report was the result of a four-year effort sponsored by the Hill Family Foundation and overseen by the University Long Range Planning Committee for the Health Sciences.

There are many familiar landmarks today on campus that were merely architectural models at the time of the report’s publication. Similarly, there are a few proposed construction sites that never materialized.

As the campus changes today with the construction of the new stadium and the proposals for bringing light rail to the University, planning documents like this show that although change is a constant, there is usually a through line to its logic.

A vision of the future (1973) for parking and traffic in the 1968 Health Sciences Planning Report

Whose woods these are…

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.”

RFID and the coming medical records storm

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.

MAC presentation

If you are attending the Midwest Archives Conference in Columbus, OH this week, I’ll be giving a talk at the session “Like Navigating through Pea Soup: Privacy Concerns in Academic and Medical Records” on Friday, May 4th at 10:15 am. My talk is titled “Hiding Information or Providing Access to Archives (HIPAA): Protected Health Information in University Archives.” It is mostly a review of the Privacy Rule and the different approaches archives take in managing collections with PHI but it also tries to look further ahead to ways we can work with the Privacy Rule based on precedents set in other federally regulated issues (e.g. copyright & IRBs) as a way for us to try and move the HIPAA conversation forward. It is the product of my previously mentioned look at the HIPAA legislation.

I’ve uploaded a copy of the PowerPoint presentation for those who are interested.


Frequently asked questions

What happens to the stuff I send to the archives?

Part III. Accessioning and Description

After materials arrive at the archives (Part I. Sending Materials to the Archives) and undergo a physical arrangement process (Part II. Initial Processing and Physical Arrangement) the collection is accessioned into the archives and a description of the materials is written to aid collection management and researcher access.

Accessioning is a formal process of taking physical custody of the materials and recording the date the materials arrived, contact information for the donor, the size of the collection upon arrival, a brief description of the materials, and any special considerations or needs that the collection will require during processing.

The description process is primarily the creation of a finding aid for the collection. Finding aids are an archival tool that attempts to facilitate access and explain the materials in their historical context. In its most basic form, finding aids provide easily readable summarized information about the collection. More detailed finding aids act as an outline for the collection and allow researchers and archivists to learn more information about the materials before looking in the boxes.

Older finding aids (pre 1990s) are often typed sheets of paper. After the introduction of the desktop computer and the WWW to the archival work flow, finding aids were written in popular desktop publishing programs and made available online using html markup or PDFs. By the late 1990s, archivists developed an encoding mechanism using SGML and later XML to create a standardized structure for electronic delivery. The standard, known as Encoded Archival Description (EAD), is commonly accepted as the preferred professional description format and allows finding aids to be discovered using popular search engines (Google) and library catalogs.

Snippet of EAD encoding

The material collected and described through the AHC History Project will follow these professional standards and will be available for users through either the University Archives web site or the University Libraries’ online database for University of Minnesota finding aids. Paper copies of all finding aids are also available at the University Archives for in-person use.

At this point, after accessioning and description, the materials will be physically stored in the caverns beneath Andersen Library. When a person identifies materials through the use of a finding aid or through a conversation with staff members at the archives, the boxes will be pulled and brought to a secure reading room for use.

Mystery photographs

These photographs were located in a recent acquisition from the Office of Communications. These five men show that history isn’t as serious as it sometimes seems, especially in the area of medical education. The original photographs are not dated and list the last names of the individuals pictured: Culver, Haynes, Miles, Gaines, and Termant(?). Any additional information that can be provided will be appreciated. Please use the comment feature to share your perspectives with other visitors.



Robert J. Gorlin papers

img0018.jpg Last week a small but valuable collection came into the project; the papers of the late Dr. Robert J. Gorlin. Dr. Gorlin, who passed away last summer at the age of 83, was a larger than life presence at the University of Minnesota for over fifty years. Dr. Gorlin was a Regents’ Professor in the School of Dentistry but also held numerous joint appointments in the Medical School. An international expert in oral and maxillofacial pathology, Dr. Gorlin identified more than 100 syndromes related to genetic causes and published over 600 articles and text books including Syndromes of the Head and Neck, the authoritative work in the field.

The collection is a half linear foot and consists primarily of correspondence, research notes, drafts of publications, and photographs. There are also several recordings of recent lectures Dr. Gorlin gave.

The materials come from the Gorlin family. Unfortunately, most of Dr. Gorlin’s office files were lost after his passing due to the space constraints faced by the department.

Up to my HIPAA in regulations

I have spent the better part of the last week immersed in the Health Insurance Portability and Accountability Act of 1996 (HIPAA) and the Privacy Rule regulation that establishes the minimum Federal standards for safeguarding the privacy of individually identifiable health information.

Mostly I am preparing for a presentation at the Midwest Archives Conference in Columbus Ohio on privacy concerns in academic and medical archives but I am also researching the need for an agreed upon role of the Privacy Rule within this archives project.

Most archives/HIPAA literature has focused on archives that are part of a health science organization or educational institution. The University of Minnesota is a hybrid institution meaning that some parts of the University are regulated by the Privacy Rule (the Academic Health Center) and other parts are not (University Archives). This makes it all the more difficult in determining how best to manage materials that may or may not contain personal health information (PHI) in the archives.

Some interesting key points I have learned so far include:

• The Privacy Rule in HIPAA applies only to covered entities (institutions governed by the Privacy Rule); it does not apply to all persons or institutions that collect individually identifiable health information.

• The Privacy Rule in HIPAA pertains only to PHI created or collected by a covered entity. Personal health information created or collected by a non-covered entity does not have to comply with the Privacy Rule.

• The Privacy Rule does not “pass through” its requirements to business associates (person/entity that provides certain functions or services for a covered entity); instead, it requires, typically by contract with the covered entity, satisfactory assurances to the safeguarding of information.

• De-identified health information is not PHI and thus not protected by the Privacy Rule.

• Enforcement of the Privacy Rule is complaint driven. Covered entities will not be periodically audited or monitored.

Most of this information and more can be found through the resources provided at the HIPAA Resources Page for the Science, Technology & Health Care Roundtable of the Society of American Archivists.

CENSHARE records

censhare cat Today started with a visit to the CENSHARE (Center to Study Human Animal Relationships and Environments) office to discuss their twenty-five plus years worth of records. The center began as a joint venture between the School of Public Health and the College of Veterinary Medicine. It was an early advocate for animal assisted therapy and promoted companion animals as a source of well-being in assisted care facilities. Today it acts as a think tank and granting agency for interdisciplinary studies of human-animal relations.

It is a small office run by a director and a loyal group of volunteers. The primary source of income for CENSHARE has been private contributions and proceeds from the Gentle Leader® head collar for dogs developed by Ruth Foster and Dr. Robert K. Anderson, two founding members of the center.

The center is moving at the end of the year and wanted to make a plan for their records prior to the move.