Joe Nadglowski Offers PCORI Health Care Providers and Researchers a Patient-Centered Perspective for Speaking about Obesity

Joe Nadglowski wants health care providers and researchers to stop using the ‘O’ word.

“Simply put, I want researchers and clinicians to strike the word ‘obese’ from their vocabularies and replace it with ‘individuals with obesity,’ or ‘patients with obesity,’” said Nadglowski, president and CEO of the nonprofit Obesity Action Coalition in Tampa and a member of the OneFlorida Clinical Research Consortium Steering Committee. The OneFlorida Clinical Research Consortium is a statewide research infrastructure and one of 13 national clinical data research networks (CDRNs) funded by the Patient-Centered Outcomes Research Institute (PCORI). The CDRNs support diverse research and work closely in collaboration with patients and clinicians to facilitate clinical research with the goal of improving health outcomes for patients across the country.

As part of PCORI’s wider mission of ensuring that health care stays focused on the patient, Nadglowski recently addressed some 60 researchers, clinicians, patients, and other stakeholders at a two-day kickoff meeting of PCORI’s Obesity Demonstration Projects in Washington, D.C. The group met to discuss the formative stages of two research initiatives on obesity that use PCORnet data and infrastructure: an observational study investigating a link between antibiotic use and obesity and another study on bariatric surgery. In addition, other OneFlorida Steering Committee Members attended the meeting and represented the consortium’s growing portfolio in obesity-related research, including Steven Smith, M.D., chief scientific officer of Florida Hospital Research Services in Orlando, and David Janicke, Ph.D., professor in the department of clinical and health psychology at the University of Florida. Smith studies obesity, diabetes and the metabolic origins of cardiovascular disease. Janicke’s research focuses on obesity interventions for individuals in underserved settings.

Nadglowski said the language that many people now use to describe obesity contributes to weight bias, which can lead to the stigmatization and marginalization of people affected by obesity.

“By using ‘fat’ and ‘obese,’ we are dehumanizing individuals affected by this disease,” Nadglowski said, adding that the number of Americans with obesity now exceeds 93 million.

Using people-first language is nothing new, Nadglowski said. He pointed to the successful adoption of people-first language in the mental health, disabilities, and diabetes communities. He said even the AMA Manual of Style—the official language usage and style guide of the American Medical Association—discourages the use of language that identifies people by their diseases. The AMA stylebook advises health care providers and researchers to “Avoid labeling (and thus equating) people with their disabilities or diseases (e.g., the blind, schizophrenics, epileptics). Instead put the person first.” Essentially, advocates of people-first language recommend using “the woman with diabetes” instead of “the diabetic woman,” “the man with schizophrenia” instead of “the schizophrenic man,” and “the patient with obesity,” instead of “the obese patient.”

The obesity community has some catching up to do, Nadglowski said. In a recent survey using the Google Scholar search engine, published in the February 2014 issue of Obesity, Ted Kyle, R.Ph., M.B.A., and Rebecca Puhl, Ph.D., found 121,000 references to the term ‘people with diabetes,’ compared with only 2,000 references to the term ‘people with obesity.’ Likewise, the researchers found only 5,500 references to the term ‘diabetic,’ as opposed to 30,400 references to the term ‘obese.’

Nadglowski’s Obesity Action Coalition, a national advocacy organization, has begun a campaign to increase awareness of the language issue. The group advocates that everyone “Ban the ‘F’ word to put an end to fat-shaming” and instead start using language that puts people first.

“Typically what I see when I give these talks is that people start thinking about it right away—there are a lot of head nods in the audience,” Nadglowski said of the audience response to his presentation at the PCORI Bariatric Surgery Study Project. Nadglowski said people adopt the changes pretty quickly in their writing. “But sometimes it takes them a little longer to adopt a better speaking language because obviously they’ve grown into the habit of speaking a certain way.”

Nadglowski said his address prompted one prominent physician in the audience to send a note to a major medical journal asking the editors to change every use of the word ‘obese’ in an article he had submitted for publication. The editors complied.

“It was great to see how he responded to my presentation, and also how well the journal responded to the request,” Nadglowski said.

As a member of the OneFlorida Steering Committee, Nadglowski also was invited to serve on the PCORnet Executive Bariatric Study Advisory Group. This group consists of some 20 researchers, clinicians, citizen-scientists, patients and other stakeholders who have been tasked with helping some of the larger groups within PCORI to plan the implementation and dissemination of research findings.

What does Nadglowski hope to accomplish on the committee?

“For me, it really is about making sure that the research stays patient-centered, and that when we generate results, they are easily translatable to the patient population.”

Of course, he also hopes to make sure that the language used to describe the research puts people first.