A national repository for historic medical information has added the website of a San Francisco health clinic focused on transgender patients to its collection. It is part of the newly created Sexual and Gender Minority Health web archive that is gathering LGBTQ health resources to preserve them in perpetuity.
The Gender Confirmation Center learned during Pride Month in June that the U.S. National Library of Medicine, which is based in Bethesda, Maryland, had selected its website for inclusion in its historical collections of online content. It came as a complete surprise to the health clinic’s staff and its founder, Dr. Scott Mosser.
An email appeared in the clinic’s inbox June 24 from Caitlin Sullivan, who is part of the federal medical library’s web collecting and archiving working group. She wrote to inform the clinic staff that her committee had selected to archive the https://www.genderconfirmation.com/ URL as part of its mission “to collect, preserve, and make available to the public materials that provide information in medicine and public health, and document their histories.”
Mosser, 54, a straight ally, told the Bay Area Reporter that at first, he thought it was spam.
“It was a very simple email, just two or three short paragraphs, and it came to me. I thought it was a scam email,” Mosser acknowledged during a recent interview. “I had to do my own independent search on the website to ensure, in fact, it was true and had happened.”
When he first launched the clinic’s website in 2012, Mosser said he never imagined it would receive such recognition as becoming a part of the National Library of Medicine’s archives. He and his colleagues at the time created it to address what they saw as a critical lack of credible health information for not only their own patients but also anyone contemplating gender-affirming care.
“I wanted patients to be able to walk into an office anywhere and have a very intelligent conversation with surgeons about their goals, what surgery can accomplish, and about the options available to them based on their body type and risks. These things are empowering for patients to come into a conversation with as a real participant,” said Mosser. “That was the spirit of the website, speaking directly to individuals facing a significant lack of information for good decision-making. I never thought it would get noticed in any significant way.”
The National Library of Medicine launched its Sexual and Gender Minority Health web archive on June 27 of this year in order to preserve LGBTQ health information provided by federal websites, nonprofit and advocacy websites, resources from sexual and gender minority (SGM) health clinics in the U.S., blogs, and other digital formats, as Sullivan noted in a blog post (https://circulatingnow.nlm.nih.gov/2024/06/27/archiving-sexual-and-gender-minority-health-resources-on-the-web/) about its creation. She explained that SGM populations, as defined by the National Institutes of Health, (https://grants.nih.gov/grants/guide/notice-files/NOT-OD-19-139.html) include, but are not limited to, individuals who identify as lesbian, gay, bisexual, asexual, transgender, Two-Spirit, queer, and/or intersex. The SGM acronym also covers individuals with same-sex or -gender attractions or behaviors and those with a difference in sex development, noted Sullivan.
“This new collection is intended to document the evolving landscape of federal, non-profit, and community-led organizations engaged in research, delivery of care, and support for sexual and gender minority health at a national level,” she wrote.
For the purposes of its website archives, the NLM will make a record of the contents of a specific URL at one point in time. Going forward, it annually makes a record of that URL to document any changes that have been made to its contents. To do so, it uses the tool called Archive-It (https://www.archive-it.org/) built by the San Francisco-based Internet Archive, which has created its own, vast digital collection of the World Wide Web.
“It is not a one-and-done kind of thing. We are collecting over time,” said Christie Moffatt, an archivist who works in the federal medical library’s Collection Development Program with its User Services and Collection Division.
Historical record of current time
With Sullivan currently on parental leave, the B.A.R. spoke with Moffatt, a straight ally who has chaired the NLM Web Collecting and Archiving Working Group since 2011. She joined the library in 2001 and has been focused on web archiving since 2009. The federal medical library’s LGBTQ-specific web archive builds on its nearly 20 thematic web archives collections, such as the one focused on HIV and AIDS created in 2016.
“Social sites and websites are the primary historical record of this current time. Future researchers who want to look back to 2024, or whatever year, will want access to web and social media of this time for various topics,” said Moffatt. “Historians of the distant past use photos, diaries, correspondence. For historians of this time, web and social media are a really important part of the primary historical record.”
Local video artist and filmmaker Texas Starr, a trans guy who chairs the advisory board for the San Francisco Public Library's James C. Hormel LGBTQIA Center, said as long as patient information is kept anonymous and safe from disclosure, he applauds the efforts to preserve trans-focused health websites. He has been helping the Hormel center reach out to the local transgender community about the importance of preserving their own personal records and ephemera, which one day they could decide to donate to an LGBTQ historical collection.
While familiar with the Gender Confirmation Center, Starr was unaware about the federal archiving of its website until asked about it by the B.A.R.
“They are very well respected,” said Starr of the health clinic. “I think it is fantastic there is a health archive that is specific to trans people for medical professionals that want to learn about best practices for trans care.”
Other sites archived
Among the inaugural group of 55 websites now part of the Sexual and Gender Minority Health web archive that Moffatt highlighted are the digital homes for the National Coalition for LGBTQ Health at https://healthlgbtq.org/; the Gay and Lesbian Medical Association at https://www.glma.org/; the National Association of Lesbian, Gay, Bisexual, Transgender Addiction Professionals at https://nalgap.org/; and the National LGBT Cancer Network at https://cancer-network.org/. In time additional websites will be added to the collection, which also currently features 15 blog sites, five news articles, and a fact sheet about the actions the Biden administration outlined last year it was taking to protect LGBTQI+ communities.
The archive is meant to capture what LGBTQ health information is being circulated at a given time. It could later prove to be inaccurate, but that doesn’t negate its being part of the historical record, noted Moffatt.
“This collection is not if you were looking for current health information. We have other resources, other authoritative sources at NLM for health information,” she said. “This is looking at it from a cultural perspective and the change in discourse over time. So we have to be clear we are not endorsing, we are not reviewing to make sure the information is accurate.”
The archival working group looks for websites with “high informational value,” explained Moffatt. They gravitate toward sites that delve deeply and widely into a topic, present underrepresented resources and perspectives, and will address gaps in its collection.
“Looking at the Gender Confirmation Center, it ranked high on all these things," said Moffatt, noting that its website “was a standout, so we include it in the collection.”
According to Moffatt, the Gender Confirmation Center website was selected for the SGM archive for various reasons. The selection committee took note of its team of medical advocates clearly listed on it, the broad number of topics with in-depth information provided about each, and the focus on support for youth and adolescents.
“As president of the Gender Confirmation Center, we hope to provide the important information for our patients and potential patients to stay informed in their journey in gender affirmation care,” stated Julianne Shirey. “We believe our center is at the forefront of providing transformational care for the transgender community.”
With health care for gender-nonconforming individuals, particularly youth, under attack by Republican lawmakers and conservative groups, Moffatt explained to the B.A.R. that the NLM isn’t wading into those political debates with the launch of its SGM archive.
Its purpose is to protect the information on the URLs it collects from being lost to medical historians and others.
“The selection is not an endorsement of the site but just really part of a larger goal to build a collection for future historical research that will allow historians to look at the discourse on a topic. In this case, from 2024 and beyond,” said Moffatt.
Growing up in Phoenix, Arizona, as a nerdy and physically short kid until he shot up in his teens, Mosser said he can empathize with his patients’ feeling socially marginalized. After graduating Baylor College of Medicine in Houston in 1997, he moved to several cities he didn’t feel at home in until relocating to San Francisco in 2004 for a cosmetic surgery fellowship with the late face lift surgeon Jack Owsley.
“San Francisco was my last-ditch effort. If I couldn’t be happy in San Francisco then I was the problem. I am happy to report two weeks in this city and it was amazing,” said Mosser, who opened his own successful cosmetic surgery practice in 2005.
Four years later a trans gentleman sought him out to have a chest surgery. Word began to spread, and soon another 10 trans patients came in seeking his help with their gender transitions. It led him to create the clinic’s website in order, said Mosser, “to get serious about fixing the information deficit and serving the community.”
The website is free for anyone to use and not monetized, he told the B.A.R. It does make it easy for trans patients to seek out care from the clinic, which has solely focused on gender-affirming care since 2017. Due to the growth in demand, the clinic now employs three surgeons in addition to Mosser, who has a nine-month backlog in being able to perform surgery on his patients.
“The word is out that the other surgeon’s provide outstanding levels of surgical results and have the same transgender health care competence. Their schedules are certainly filling up,” he said.
They are also constantly updating the center’s website with the latest developments in gender-affirming care. As word choices have changed and new treatments or surgeries come on line, Mosser said they make sure to reflect those advancements on the site. (Archival versions of it over the years have been preserved by the Internet Archive.)
“We were gratified many, many patients came in thanking us for the content on the website. In our opinion that was the end goal, to deliver this to the actual individual seeking and thinking about surgery,” said Mosser. “We are kind of blown away that it was then noticed as an important resource by the National Library of Medicine and potentially will persist as a tool and a reference point for others down the road.”
One aspect of the center’s website Mosser is most proud of is how it takes a body positive focus and breaks down surgery options based on one’s body type. He pointed as an example the in-depth information it has on female-to-male top surgeries, (https://www.genderconfirmation.com/ftm-top-surgery-options/) with illustrations of the scarring and end result a patient can expect.
“It is also open to all options regardless of gender identity, so it respects an expansive perspective regarding the gender journey. Those things we are very proud of and seem to be very well received,” said Mosser.
They make weekly minor updates to the website, while more extensive updates come about every five months, noted Mosser. There is always new information to upload, he added, which is read and edited by multiple people at the health clinic.
“The trans community is fantastic in that they help us to continue to improve our website. They are reading our website carefully to see if it does need to change and improve,” said Mosser. “If something comes up or something is outdated, I love getting those notifications. It is always respectful and gives us the opportunity for getting it back up to speed where it needs to be.”
One recent change has been the addition of bylines to articles posted on the site, to help with search optimization and show there is an authority behind the information.
It also adds a layer of accuracy to the material, noted Mosser.
“We are good but not where I envision I would like for things to end up for true optimization of information availability,” he said.
At the end of the day, Mosser hopes his clinic’s website provides assistance not only to trans individuals who want to know more about their health needs but also educates their family members about the medical issues they are facing and need support with.
“I can say I am very saddened that the absolutely unnecessary politicization of this issue is really isolating people and harming people,” said Mosser when asked about the legislative rollback in various states to health care access for trans patients.
Additional LGBTQ medical archival materials
In addition to its archive of websites, the NLM has other resources related to LGBTQ health that can be accessed online. Moffatt highlighted its Images from the History of Medicine collection at https://collections.nlm.nih.gov/?f%5Bdrep2.isMemberOfCollection%5D%5B%5D=DREPIHM that includes posters, postcards, materials on HIV/AIDS prevention, including safe sex and use of condoms.
There are also two web-based exhibitions on AIDS education and prevention posters, such as the “Surviving and Thriving: AIDS, Politics and Culture” digital gallery at https://www.nlm.nih.gov/exhibition/surviving-and-thriving/digitalgallery.html. The other is “AIDS, Posters, and Stories of Public Health: A People’s History of a Pandemic” accessed online at https://www.nlm.nih.gov/exhibition/aids-posters/index.html.
Its holdings can be searched using specific terms at the website https://collections.nlm.nih.gov/. Entering LGBTQ, for instance, brought up 105 items.
As for the Sexual and Gender Minority Health web archive, NLM staff are collaborating with the Sexual Minority Gender Research Office at the National Institutes of Health to determine new websites to add to it. The public can also submit suggestions.
“We welcome recommendations, so that is something we would really be open to,” said Moffatt.
Matthew S. Bajko is an assistant editor at the Bay Area Reporter.
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