46 scholars, self-advocates bring knowledge to Wikipedia’s disability healthcare content

Sponsored by the WITH Foundation and hosted by Wiki Education throughout the past year, five Wiki Scientists courses and one editing workshop brought the expertise and lived experiences of 46 scholars and self-advocates of healthcare and adult disabilities to Wikipedia. The professional development courses supported enhancements to 88 Wikipedia articles that have since been viewed 1.23 million times.

Motivated by her lifelong interest and focus on reproductive health and justice, course participant Paula A. Hillard, MD valued the unique learning opportunity to bring her knowledge to the public through the open-access encyclopedia.

“I loved the encouragement and support in my ventures into editing Wikipedia,” said Hillard, a pediatric and adolescent gynecology specialist at Stanford Children’s Health and professor at Stanford University School of Medicine. “In the medical field in particular, many Wikipedia articles need updating. As a physician, I know that many individuals use Wikipedia as one of their online sources of medical information, so the articles must be medically accurate as well as inclusive.”

While previously unfamiliar with the WITH Foundation, Hillard immediately connected with the goals of the organization and eagerly jumped into editing.

“When I read what the [WITH] acronym stands for, ‘Working for Inclusive and Transformative Healthcare’, I was hooked, and wanted the chance to help further that mission,” explained Hillard.  

Fellow course participant Juanita Panlener discovered the learning opportunity through her organization’s ongoing collaboration with the WITH Foundation. As the manager of the National Resource Center of the Spina Bifida Association, Panlener provides information about living with Spina Bifida to family members, individuals, social professionals, and more.

“Once I realized the value of learning how to be a responsible contributor to Wikipedia, and once I realized that we could play a part in updating content about Spina Bifida and topics related to Spina Bifida, I was in!” Panlener emphasized. 

Course participants made high-quality improvements to a variety of Wikipedia articles focused on disability healthcare, including Down syndrome, Disability sport classification, De Barsy syndrome, Evidence-based medicine, Disability treatments in the United States, Curb cut effect, and Ableism.

De Barsy syndrome Wikipedia article (screenshot)
Screenshot of the De Barsy syndrome Wikipedia article (click to view)

Curious about the editing process and motivated by the chance to dedicate time to improving Wikipedia by researching a topic aligned with her interests, Arizona State University professor Kenicia Wright joined the course with limited prior knowledge of the site.

“I was surprised by the increase in experts contributing to information on Wikipedia, the sources that are added to support the information being uploaded on different topics, and the goal/number of academic scholars contributing to Wikipedia articles on certain topics,” said Wright.

Like Wright, many participants were surprised by the course content, including the exploration of Wikipedia’s robust editing policies and guidelines in place to safeguard article quality.

“Prior to the course, I was unaware of the extensive behind-the-scenes work involved in creating Wikipedia articles,” said Rachel Lawerh, Population Student Health PhD student at the University of Ottawa. “It was fascinating to see editors collaborating on various topics, guidelines, and measures that are put in place to minimize the spread of misinformation on the platform.”

For instructor Will Kent, Scholars & Scientists Program Manager at Wiki Education, the WITH courses provided the ideal space for experts to gather and share their deep subject-area knowledge acquired from lived experience.

“An important element to these courses is the connection between people’s personal motivations to edit articles in the area of disabilities,” said Kent. “It was especially rewarding for me as an instructor to work with new editors who brought both personal and professional experiences to their writing. In addition to being meaningful to the course participants, it’s important for people writing about the community they represent to be part of that community. This really shines through in their work.”

Interested in learning how to add your own expertise to Wikipedia? Explore Wiki Education’s upcoming courses for subject-area experts.

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