AAHM Workshop, Negotiating Access to Patient Related Materials: A Conversation between Archivists and Historians, Highlights Researcher Needs

On Saturday, May 10, 2014 members of the Private Practices, Public Health project team hosted a lunch session at the 2014 annual meeting of the American Association for the History of Medicine in Chicago. The session, Negotiating Access to Patient Related Materials: A Conversation between Archivists and Historians, represents efforts by the Medical Heritage Library, Harvard Medical School, and Johns Hopkins University to develop best practices for archivists to speed access to patient-related and patient-generated records that are informed by the working realities of researchers and historians. keys

Session panelists included Phoebe Evans Letocha, Collections Management Archivist, Alan Mason Chesney Medical Archives at Johns Hopkins, who provided attendees with an overview of HIPAA and what has changed as a result of 2013 revisions to the Privacy Rule; historians Janet Golden, Rutgers University, and Cynthia Connolly, University of Pennsylvania, who shared with the audience their research experiences and difficulties using patient records to inform their research; and Emily R. Novak Gustainis, Head, Collections Services, Center for the History of Medicine, who presented on findings for the surveyResearch Access to Protected Records Containing Health Information About Individuals, which sought to elicit information from researchers about what they want from descriptive guides to historical collections containing patient information. The session was moderated by Scott Podolsky, Director of the Center for the History of Medicine and newly elected AAHM Councilor.

Session participants generated a number of points for archivists to consider, including:

  • Opening up communications with institutional compliance officers to develop best practices for assessing the “real” risk using patient records for historical research presents to institutions
  • Developing better ways to communicate to institutional review boards (IRBs) that historians do not want to distribute research unethically
  • Forging a partnership between the American Association for the History of Medicine (AAHM), the Society of American Archivists (SAA), and a professional legal organization to help explain the different access laws to both archivists and researchers state by state and to help advocate for a more consistent researcher experience through more uniform laws
  •  Crowd-sourcing information on collections with restricted content through researcher participation to help future historians understand whether or not they should pursue an IRB

Feedback from the session will also be incorporated in to Gustainis and Letocha’s presentations at the August 2014 meeting of the Society for American Archivists as part of the session, Partners in Practice: Archivists and Researchers Collaboratively Improving Access to Health Collections.

MHL Lunch Session at AAHM 2013 at Emory University

The Medical Heritage Library delivered a successful lunch session at the 2013 annual meeting of the American Association for the History of Medicine, held at Emory University in Atlanta, GA, on Saturday, May 18, 2013. Entitled “Maximizing the Medical Heritage Library’s Usefulness for Research: New Content, New Tools”, the four panelists highlighted recent additions to the MHL and offered a glimpse into future plans: Continue reading

Digital Resources Session Draws Sold Out Crowd

Representatives of Medical Heritage Library (MHL) collaborating institutions presented a lunchtime session at the American Association for the History of Medicine annual meeting on Saturday, April 30th.

Michael North, National Library of Medicine (NLM), introduced the NLM’s improved Directory of History of Medicine Collections (http://www.cf.nlm.nih.gov/hmddirectory/index.cfm). The directory includes 200 repositories globally and is now searchable by subject and location. It is possible to refine searches, adding subjects or locations to assist users in prioritizing repositories to visit. He also demonstrated a new NLM resource, Digital Collections (http://collections.nlm.nih.gov), a repository for preservation and access to historical biomedical materials. Michael discussed one type of digital collection, 28 digitized films issued by the military during WWII, mostly related to hygiene, that have been transcribed so are fully searchable and accessible.

Stephen Novak, Augustus C. Long Health Sciences Library, Columbia University, discussed Archive Grid (http://archivegrid.org/web/index.jsp), a portal to find archival collections held by thousands of repositories globally. Search results can be sorted by location, relevance, and repository. Links to finding aids appear in search results. Stephen noted that the NLM’s Finding Aids Consortium (http://www.nlm.nih.gov/hmd/consortium/index.html) provides access to a narrower—and highly relevant—body of finding aids drawn from twelve major history of medicine libraries.

Jack Eckert, Countway Library, discussed finding digitized books. In addition to commercial sources, there are a number of freely available collections of digitized books in the history of medicine. BASE (Bielefeld Academic Search Engine) (http://www.base-search.net/) offers open access web resources from 1700 repositories around the world.  HATHI Trust (http://www.hathitrust.org/home) provides access to  8.6 million volumes with full text search; while only 27% of these are in the public domain, many more can be used for educational and research purposes. Google Books (http://books.google.com/) has an unfortunate user interface and scanning quality issues. It does provide deep searching across a wide variety of materials. Specialized sources include the Bibliothèque numérique Medica – Histoire de la santé  at BIU Santé, Paris (http://www.bium.univ-paris5.fr/histmed/medica.htm), which covers science and medicine, and Taubman Medical Library’s Homeopathy Collection (http://quod.lib.umich.edu/h/homeop/). The Medical Heritage Library (http://www.archive.org/details/medicalheritagelibrary/) offers 9,000 medical rare books currently, with more coming. The online book reader provides tabbed access to search terms and a number of other functions. Books can be downloaded in a variety of formats.

Lori Jahnke, College of Physicians of Philadelphia, discussed the next steps for the MHL. In addition to digitizing new material, we are turning our attention to aggregating existing content and to developing an access environment that will facilitate cross-disciplinary study and digital scholarship in the history of medicine. Among our goals is linking primary sources with secondary literature, image repositories, film, and datasets. We plan to draw upon tools such as the Unified Medical Language System to improve the richness of content description, which will enable concept mapping as part of a more efficient discovery process. As the wealth of historical resources on the web grows so must our efforts in creating a coherent  access environment that supports scholarly needs.

Jeremy Greene, Department of the History of Science, Harvard University, a member of the MHL’s scholarly advisory committee, opened the audience discussion by asking, how are we using digital resources, what do we need in terms of sources and tools, and how should the availability of these materials influence the training of new scholars? He described several ways in which digital sources are commonly employed: as a way to locate resources that are remote to the user, which are then printed; a convenient format to carry and use digital objects, which are downloaded, read, and annotated on the user’s computer; and as sources for objects that are downloaded then combined in single documents or databases for more powerful search and manipulation. These methods provide important efficiencies for scholars, but don’t use technology to extend the effectiveness of the scholar’s work. How can we get to the next level?

Audience members responded to the presentations and comments with a number of ideas about how digital resources and tools could be more useful. Some of these include:

– Projects tend to follow the subject strengths of collections. Scholars also want to cross-reference such holdings with materials in other formats and subjects.

– History of medicine should be presented in relation to social history, cultural history, and related fields.

– Projects need to be aware of other digital projects such as those undertaken by Google and others, leverage those projects, and demonstrate their value.

– Scholars need meta-tools for searching—not more silos. Will MHL bring materials together via a search tool?

– We need to bring the museum into the library – add artifacts and 3-D images to text repositories under single search tools.

– Lack of annotation is an obstacle for scholarly use of digital objects; what tools are available to support this activity?

– Who decides what gets digitized? Where do the resources come from?

– Scholars are accustomed to organizing paper files; what is the best way to organize the digital materials we download? What software can support organization?

We will be following up on the questions and ideas raised by participants. The MHL is committed to ongoing scholarly engagement to improve the library’s ability to support the work of students and scholars.

How Digital Resources Can Support Your Scholarship or How I Learned to Stop Worrying and Love the Digital World

Photograph from "Making the Most of Life"

Photograph from "Making the Most of Life." Digitized for the Medical Heritage Library from the collections of the Columbia University Health Sciences Library.

Going to Philadelphia in April for AAHM?

If you’re attending the American Association for the History of Medicine annual meeting, join curators and reference librarians from leading academic medical libraries for lunch on Saturday. These subject specialists will discuss the digital resources, websites and databases, they consult when responding to research questions.  Among the sources under discussion will be the Medical Heritage Library.

This will also be an opportunity to learn about digital scholarship in the history of medicine itself and discuss the creative use of emerging resources. 

The lunch talk features:

Stephen Novak, Head, Archives and Special Collections, Columbia University Medical Center;

Michael North, Head of the Rare Books & Early Manuscripts Section in the History of Medicine Division of the National Library of Medicine;

Jack Eckert, Public Services Librarian, Center for the History of Medicine, Countway Medical Library;

Lori Jahnke, S. Gordon Castigliano CLIR Fellow, the College of Physicians of Philadelphia;

Jeremy Greene, Assistant Professor of the History of Science, Harvard University.

For more information about the AAHM meeting program, look here. We hope to see you on April 30 at session L3: How Digital Resources Can Support Your Scholarship.

Find Making the Most of Life at http://www.medicalheritage.org/wp-content/uploads/2011/03/makingmostoflife00oshe_0018.jpg). View all our collections at http://www.archive.org/details/medicalheritagelibrary.