Digitizing Patient Information and Laboratory Research Data for Archival Reference and Research

Project Overview

• Enhanced access and use.
• Preservation of records.
• Professional model development.

Data sources (from the Medical Archives, Johns Hopkins Medical Institutions):

• Brady Urological Institute (BUI) (1915-1975)--clinical records.
• Psychobiology Laboratory (1920-1975)--experimental data.

Potential uses of records:

• Clinical teaching and research.
• Scientific teaching and research.
• Historical teaching and research.
• Anthropological, sociological and behavioral research.
• Medical and scientific policy development.

Values of BUI records for users:

• Discrete, longitudinal collection.
• Original order maintained.
• Covers a period of key surgical advances at a site considered by many to be the birthplace or urology.
• Meticulously collected.
• Peer evaluated/validated through publication.
• Used by other researchers in subsequent studies.
• Contain detailed sociological context.
• Wide range of records types and formats.
• Model of observational, rather than technological, data.
• Many rare and unusual cases.
• Much of the data remains unpublished in a research area that is still poorly understood.

Values of the Richter data for users:

• Discrete, longitudinal collection.
• Original order maintained.
• Covers a period of key scientific advances at a site considered by many to be the birthplace of psychobiology.
• Contains additional documentation of John B. Watson, who designed the Psychobiology Laboratory as a model laboratory work environment, and is thus a key collection for behavioral studies of scientific processes.
• Meticulously collected.
• Peer evaluated/validated through publication.
• Used by other researchers in subsequent studies.
• Wide range of records types and formats.
• Model of scientific data.
• Research norms have changed and methods regulated, and many of the experiments documented in these records cannot be recreated.

Limitations on physical use of these records:

• Remote storage.
• Large volume.
• Poor physical condition.
• Contaminated by lead dust.

Concerns regarding intellectual use of these records:

• Patient confidentiality.
• Human subjects review.
• Public scrutiny of clinical and experimental processes.
• Animal rights activism.
• Lack of manipulability of data.
• Difficult to link to other relevant source materials.

Benefits of digitization:

• Removal of most of the physical access and use limitations (although some intellectual concerns might be heightened).
• Masking of personally identifiable information contained in the records.
• Potential to develop secure research protocols through automatic online institutional indemnification and user identification procedures.
• Increased manipulability of records.
• More detailed descriptive and access capabilities.
• Linkage capabilities to other historical and contemporary information resources.
• Potential for mining additional knowledge from existing sources.

Component processes of this research project:

• Literature reviews--archival appraisal of history of medicine and science documentation; management of architectural records; digital libraries; digital preservation; health science ethics and policy; and telemedicine.
• Citation studies of research literature related to these records (to assist in prioritizing archival materials for digitization).
• Review of protocols being used by existing historical digitization projects.
• Scientific, medical, and anthropological research trend and norms analyses.
• Imaging feasibility experiments, including time/motion studies.
• Metadata development for imaged materials.
• Development of a cost considerations matrix.
• Consultation with project advisors.

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