Revealing Data: Collecting Data about TB, ca. 1900

By Susan L. Speaker ~

In the summer of 1901, Elizabeth Blauvelt, a Johns Hopkins medical student, prepared a summary of data (“Report on Data Obtained in Visits to Tuberculosis Patients…,”) she had collected on 116 tuberculosis patients between January and June of that year.

The patients, too poor to afford a private physician, had been seen at the Johns Hopkins Hospital outpatient dispensary. Blauvelt and three other women medical students—Adelaide Dutcher, Blanche Epler, and Esther Rosencrantz—were part of a project begun by Dr. William Osler to provide follow-up care via home visits. The program had several related purposes: to check the patients’ health status; to educate them about their disease and how to avoid spreading it; and to gather information about the patients’ living conditions and how those conditions might encourage and spread the illness.

Tuberculosis of the lungs (aka “consumption” or “phthisis”) was one of the two leading causes of death in the early 1900s (the other was pneumonia.) It often killed slowly, and patients might be coughing up infected sputum for years, as the disease gradually destroyed their lungs and wasted their bodies. It became an especially pressing public health issue in the late 19th century, as millions of immigrants poured into America’s larger cities. The crowded, dirty tenements where many were forced to live provided ideal conditions for the transmission of TB and other illnesses, as did some of the workplaces, such as garment sweatshops, where immigrants often found jobs. Though mortality rates for TB had been declining overall by the late 1800s, incidence among the poor was still high, and more affluent citizens worried about the reservoirs of infection present in the urban slums. With early diagnosis, adequate diet, rest, and fresh air—at a TB sanitarium, for example—some victims could recover or at least have a remission, but such care wasn’t an option for the poor. Osler’s students, along with visiting nurses, advised their patients about basic “containment” measures, particularly disposing of sputum properly, and sleeping alone, so others in the household would be less exposed. They also encouraged families to spend a little more on nourishing food (eggs, milk, etc.) for the patients if they could.

The students were also gathering data as they cared for patients, and the types of data included in their published reports and in Ms. Blauvelt’s handwritten record show how some physicians of this era approached TB prevention and control. Along with basic demographic data (age, gender, marital status, number of children, and occupation), they also noted ethnicity (was the patient white, native-born, German, Italian, Russian, or black?), because ethnic groups in the cities were also small homogenous communities occupying specific geographic spaces. Public health workers already understood that poverty fostered illness and vice-versa, but wanted to know how ethnicity affected a patient’s environment, or the ability of the patient’s family to learn better practices. They also tried to assess which groups posed greater health threats, and why certain poor communities seemed more vulnerable to TB than others.

Besides tracking patients’ ethnic identity, the students assessed the patients’ living quarters and noted how many people shared the residence, whether the location was an unhealthy one, whether the residence had adequate light and ventilation, and how clean it was. And they recorded how many different places each patient had lived since his or her TB diagnosis. This data would provide support for the “house infection” concept introduced by Philadelphia TB expert Lawrence Flick in 1888. Flick’s research had shown that TB bacteria could persist in rooms even after TB patients had moved out; as most landlords wouldn’t disinfect apartments between tenants, the next occupants might contract the disease, too. Flick recommended that cities require physicians to register all TB cases, and arrange to have all TB patient residences disinfected by either landlords or city health departments. He and others, including Osler, also advocated building public sanitaria and sending patients there so that they couldn’t spread infection, and might be cured.

William Osler, “On the study of tuberculosis,” 1900

Adelaide Dutcher, “Where the Danger lies in Tuberculosis,” 1900

William Osler, “The Home in Relation to the Tuberculosis Problem,” 1903

Mandatory registration and other measures were not as effective in controlling TB as advocates had hoped. Private physicians resisted reporting cases, as they didn’t wish to expose their patients’ medical condition in public records, or subject their homes to bureaucratic regulation. Thus, though many large cities enacted TB registration ordinances between 1890 and 1915, some made reporting optional for private physicians.  Health departments also were often overwhelmed by the record-keeping process, though efforts to track TB and other diseases eventually provided data needed to justify improvements in sanitation and housing. It turned out that the most effective strategy for TB control and prevention was to make patients and communities active participants through various education campaigns. By the early 1920s the home visitation program of the Johns Hopkins medical students, and similar public health projects that followed, had achieved significant reductions in TB incidence.

Note: Ms. Blauvelt’s report and the articles by Ms. Dutcher and Dr. Osler appear on NLM’s Profiles in Science site featuring Dr. Osler. The handwritten report is part of the William Osler Collection at the Alan Mason Chesney Medical Archives at Johns Hopkins University. Clinic case numbers have been redacted as protected health information.

We hear about data every day. In historical medical collections, data abounds, both quantitative and qualitative. In its format, scope, and biases, data inherently contains more information than its face value. This series, Revealing Data, explores how, by preserving the research data of the past and making it publicly available, the National Library of Medicine (NLM) helps to ensure that generations of researchers can reexamine it, reveal new stories, and make new discoveries. As the NLM becomes the new home of data science at the National Institutes of Health (NIH), Circulating Now explores what researchers from a variety of disciplines are learning from centuries of preserved data, and how their work can help us think about the future preservation and uses of the data we collect today.

Susan Speaker, PhD, is Historian for the Digital Manuscripts Program of the History of Medicine Division at the National Library of Medicine.