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LGBT data collection underway in California, San Francisco

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LGBT data collection underway in California, San Francisco

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This article is the first of three looking at LGBT data collection and was written as part of a California Health Journalism Fellowship project with the University of Southern California-Annenberg Center for Health Care Journalism.

Other stories in this series include:

LGBT community fights to be counted

Data shed light on LGBT retirees

Natalie Summers from Openhouse, right, took a photo of Sister Rose Mary Chicken and E.J. Hebert in Jane Warner Plaza.
Natalie Summers from Openhouse, right, took a photo of Sister Rose Mary Chicken and E.J. Hebert in Jane Warner Plaza in May as part of a project that asked federal officials not to remove LGBT elders from the National Survey of Older Americans. Photo: Rick Gerharter
The Bay Area Reporter
Wednesday, July 19, 2017

In the late 1970s Prudence Hull and her colleagues at the community college district in San Francisco worked to defeat a proposed policy that would have banned gay and lesbian people, and possibly straight educators with gay friends, from working in California's public schools. To their relief, voters rejected the statewide ballot measure, known as the Briggs initiative, in November 1978.

At that time if a government agency had asked someone about their sexual orientation, "people would have absolutely freaked," said Hull, 66, who is straight, as she prepared to march in this year's Pride parade in San Francisco with a contingent honoring those who successfully campaigned against the homophobic measure.

Throughout her life Hull said she couldn't recall ever being asked to specify her sexual orientation on a government form or in a health care setting. She doubted she would have provided such information had she been asked to due to privacy concerns.

"The only person I could think would ask such a question would be my gynecologist asking about my sexual health history," said Hull. "She is the only person who needs to know that information. I can't think of anyone else who does."

Her daughter, Greta Hull, 26, who is also straight, questioned why a government agency would need to ask a person if they are gay, lesbian, bisexual, or transgender outside of collecting such demographic data on a census form.

"I shouldn't have to give all my information to the state all the time. They don't need to know that," she said.

Yet officials in San Francisco and Sacramento are aiming to make answering questions about sexual orientation and gender identity (SOGI) routine as they begin to collect such data in a variety of settings and on various forms.

For many people, it will be the first time they have been confronted with such inquiries. And it remains to be seen if people will be willing to divulge such intimate details about themselves to the government. The questions will be voluntary to answer.

A 2013 survey of 301 community health center clients in Boston, Baltimore, Chicago, and Beaufort, South Carolina, of which 51 percent identified as straight or heterosexual, found that 74 percent agreed it was important to ask about sexual orientation on forms. The survey, discussed in a paper published in the September 2014 issue of PLOS One, also found that 82 percent of the respondents felt it was important to ask about gender identity.

"This indicates broad support among LGB patients, as well as among heterosexual patients, for sexual orientation data collection in clinical settings," concluded the paper's authors, led by Sean Cahill, Ph.D., the director of health policy research at the Fenway Institute, a program of Fenway Health that operates the Boston clinic included in the survey.

San Francisco and California officials, as well as LGBT advocates and health researchers, have spent months scrutinizing not only how to frame the SOGI questions but also how to train the frontline staff that will be asking the questions. Their goal is to ensure enough people disclose their sexual orientation and gender identity so that the data collected produces a wealth of valuable insight into the health and well-being of the LGBT community.

"Individuals coming to us should feel comfortable sharing their life's journey with us to help them with their care," said Barbara Garcia, the director of San Francisco's Department of Public Health.

For Garcia, a Latina lesbian, the issue is not only one she is committed to professionally. She has personally experienced what it means not to be counted in official data.

"Throughout my career I have always been told Latinos don't need this program or that program and I would want the data to show it. I would be told they didn't have the programs so they don't have the data," said Garcia, who was asked by her OB-GYN about her sexual orientation. "It is one of these issues where science creates a myth about me from a lack of data to show it."

LGBT advocates and policymakers argue that the health needs of the LGBT community are largely "invisible" because of the lack of demographic data on it. Without asking people to disclose if they are LGBT, they contend it is impossible to know what health ailments are prevalent in the community and difficult to request adequate funding from state agencies to address them.

In its Fair Share for Equality report released in early 2016, the statewide LGBT advocacy group Equality California noted, "The collection of accurate, timely data about the LGBT community is vital to reducing disparities in health and well-being, simply because if we are not counted, we do not count."

It argued that government agencies, lawmakers, health professionals, and other entities providing social services "need to know how many LGBT people are being served by existing programs in order to assess how to better meet LGBT health and wellbeing disparities."

Amanda Wallner, the director of the California LGBT Health & Human Services Network, acknowledged that people might find it "invasive" to be asked such questions. She has yet to encounter SOGI questions herself on a government form or survey.

"But really, for folks who have been advocating for resources for LGBTQ communities, for resources to address the health needs of our communities ... it is incredibly important for us to be visible and to be counted," said Wallner, a lesbian who advocates on behalf of 60 organizations across the state. "That is why we fought so hard to have these questions included. We hope the data, when it is released, will help with our future advocacy."

Due to legislation signed in 2015 by Governor Jerry Brown, California's departments of health care services, public health, social services, and aging are required to begin collecting demographic data on LGBT people by next summer. State officials are working through how they will ask, collect, and secure such information and have consulted with LGBT advocates on how to do so in a culturally competent manner.

"We wanted to provide some best practices," said Wallner, "on collecting sexual orientation and gender identity that has been tested in the field and easy for people to understand and yield accurate results."

The California Department of Public Health declined the Bay Area Reporter's interview requests for this article. In response to emailed questions, the agency said it has been working on implementation of Assembly Bill 959, which was authored by state Assemblyman David Chiu (D-San Francisco) and sponsored by EQCA, since last October and would meet the deadline to do so by July 1, 2018.

It is recommending the adoption of the federal Office of National Coordinator standards for collection of SOGI data. The department added that it "will allow programs and subject matter experts (that are designing the surveys) to determine how the questions will comply with legislation."

Recent surveys

In recent years several state surveys have included SOGI questions, such as the California Behavioral Risk Factor Survey, the California Refugee Health Assessment, and the California Reducing Disparities Project. On the 2015 California Health Interview Survey, for example, respondents were asked in the fourth section, under the heading of "General Health, Disability, and Sexual Health," the question: Do you think of yourself as straight or heterosexual, as gay, lesbian, or homosexual, or bisexual?

It was the 18th question asked in that section of the biennial survey, which has asked about sexual orientation since 2001. Then, after being asked about being tested for HIV and if they have a same-sex spouse or domestic partner, respondents were asked what their sex was listed as on their birth certificates. They were next asked if they "currently describe" themselves "as male, female, or transgender" and then asked to state their "current gender identity."

(A study that looked at the response rates to the sexual orientation question between 2003 and 2011 found that each year roughly 98 percent of respondents answered it.)

As it works to add SOGI questions to more surveys and forms, the California Health and Human Services Agency has sought input from LGBT organizations and experts in the collection of SOGI data. The state's health department said it had received a memo from 19 LGBT organizations that outlined some of the concerns around SOGI data collection and recommended it look at measures developed by the Williams Institute, an LGBT think tank based at the UCLA School of Law that has been a pioneer in the field of LGBT demographics.

"CDPH is allowing subject matter experts to frame the questions (given their specific program needs) but working on framing the responses that users will be able to voluntarily select," said the agency.

SF agencies add SOGI questions

In San Francisco city departments and contractors providing health care and social services had to submit plans by July 1 on how they would collect and analyze data concerning the sexual orientation and gender identity of the clients they serve. The policy, adopted in 2016, stemmed from a recommendation made by the city's LGBT Aging Policy Task Force.

Similar to the state forms and surveys, answering the SOGI questions asked by the city agencies will be voluntary for clients. The agencies covered by the policy are the departments of public health; human services; children, youth and their families; aging and adult services; the Mayor's Office of Housing and Community Development; and the Department of Homelessness and Supportive Housing.

The agencies were given two years to submit a report to the city administrator that analyzes the data and identifies all services and programs where LGBT people are underrepresented. They were also tasked with developing plans to make their services and programs more accessible to the LGBT community.

The Department of Aging and Adult Services began collecting SOGI data Monday, July 3. One of the agency's primary tasks is to care for 22,000 people who need in-home supportive services; most are seniors but some are younger people with mobility issues.

"It makes a clear statement we support LGBT seniors and older adults. And it is a statement to our staff and to our nonprofit partners that we care about these issues," said Shireen McSpadden, a lesbian and the executive director of DAAS since April 2016.

By collecting the SOGI data, McSpadden said her agency will gain a better understanding of the people it is serving and be better able to tailor its services to meet the needs of the LGBT aging community.

"We have been collecting data on people's ethnicity, age, and gender," noted McSpadden. Adding SOGI to the list "is telling us more about the story of whom we serve," she said.

Earlier this year three DAAS staffers took part in a training conducted by Openhouse, a nonprofit that provides services to LGBT older adults, so that they could then train all 100 of the agency's employees, as well as those at 40 community-based organizations it contracts with, how to ask the SOGI questions and why it is important to gather such information. Those trainings were completed in June.

"I am very excited about this," said McSpadden. "I feel we are in a position to take a lead on it. We are one of the first to do it."

As part of the training Tom Nolan, 72, a manager of special projects for DAAS, spoke about his own experience coming out as a gay man later in life after being married to a woman for years. He also discussed how many LGBT people who grew up in the 1950s and 1960s lived in fear that their being LGBT would be exposed and lead to losing their jobs or being ostracized by family. And he pointed out how many older gay men lost loved ones and many of their friends to AIDS in the 1980s.

"I felt personalizing it was pretty important because most of the people over there are quite young, most in their 30s and 40s. They have no way of knowing what it was like in those days," explained Nolan.

A key focus of the sessions was going over the right and wrong way to ask SOGI questions, said Nolan. The employees role-played different scenarios in order to learn how to respond to clients who may be reticent about answering the SOGI questions.

The agency's in-take forms don't get to the SOGI section until after clients are asked for their age, ethnicity, address, and Social Security number. It is asking its clients who speak Spanish, Tagalog, and Chinese the questions, having had native speakers vet the translations.

"My sense is we will have a lot of declines to state. My age and above they were closeted for a long, long time. They are concerned, rightly, about privacy issues and simply talking about it, especially some of the ethnic communities," said Nolan. "There is a reluctance to talk about this. My generation is not used to talking about this; my generation didn't talk about sex, we barely believed in it. Younger seniors may not be so concerned about it."

The DAAS employees were instructed they should not treat the SOGI questions any differently from the other demographic questions they ask. But they are to explain to people they don't have to answer the questions, and no matter what they decide to do, it won't affect the services they receive.

"We wanted to normalize it," said Nolan, adding that the staff was instructed not to say, "Now we have some very sensitive questions" when they got to the SOGI section.

"We are trying to make sure people feel welcome and understood," said Nolan. "We began this with, when asking demographic questions, do a prelude to it: 'I need to ask you a few questions designed to help the entire community.'"

The agency plans to evaluate the responses it receives to the SOGI questions in a few months but has asked its staff to report any issues they are seeing sooner so they can be addressed.

"We can modify it as we go along and be an example for the other departments," said Nolan.

The city's Department of Public Health, with more than 8,000 employees in various divisions and settings, from community clinics and the hospital emergency room to the county jail, plans to begin its training about asking SOGI questions in the coming months. It is still figuring out when clients will be asked SOGI questions and how to incorporate them into the new electronic health record system it will be transitioning to next year.

Health officials are also still determining the best way to collect SOGI data when a person is being seen at the emergency room or a mental health clinic, situations where the individual may be unable to answer such questions. The department plans to select up to nine sites to test pilot how it asks the SOGI questions so it can make any necessary adjustments or tweaks before rolling it out across the entire agency.

"We are not going full steam ahead in terms of tomorrow everybody will be asked this question. We are starting the process to get our staff ready and then the community ready to hear these questions in a non-threatening way," said Dr. Ayanna Bennett, director of interdivisional initiatives at the health department. "It will be a slow rollout."

Bennett, who is straight, chairs the department's SOGI Steering Committee, comprised of 15 to 20 people from different sections within the public health agency. Some sections, such as those focused on HIV and sexually transmitted diseases, have been collecting SOGI data for decades, while for others it will be the first time.

"We do have some agreement on how the questions will be asked. The difference will be in who asks them and in what circumstances," said Bennett.

It is important for a person's health care provider to know what pronouns their patients use and if their name they are called differs from that on their insurance, Bennett noted, as well as if their gender is different from the one they were assigned at birth.

"We have clinical reasons to know all of those things. They impact the care you get in certain circumstances," she said. "It needs to be explained to people why we are asking it. It doesn't have a impact if you are seeing a podiatrist, but it does when seeing a gynecologist."

For the last 12 years Bennett has been asking the adolescent patients she sees if they are LGBT. Over that time she has noticed a difference in their reactions to the question.

"It has become uninteresting to them," she said. "It used to elicit an eyebrow and now not at all. Now they are much quicker to answer than they used to."

She suspects the same will be true of the general public as people become conditioned to being asked the SOGI questions.

"What we find when we start is not what we will find two or three years down the line," Bennett predicted. "People have to hear it a few times to decide what they think about it."

When he worked for a legal assistance agency in San Francisco whose clients were mostly gay men, Owen Stephens said he would always ask if people identified as gay, lesbian, bisexual, or transgender.

"Sometimes people didn't want to answer the question," said Owens, 39, who is gay.

Rarely has he been asked such a question in his personal life, said Owens, explaining that he purposefully picked a gay doctor as his primary care physician so he would feel comfortable disclosing his sexual orientation. As long as such personal information is kept safe, Owens said he has no problem having SOGI questions be asked on government forms.

"We have to be visible somehow, and data is a way to be visible," said Owens of the LGBT community. "I would hope they always ask it in a neutral enough way what is your sexual orientation. They should let them answer it, and if they don't know what to say, give them an option."

Wallner, with the network of LGBT service providers, stressed that SOGI data collected by local and state agencies is kept confidential.

"If you are ever concerned about your privacy, you have every right to ask about that and to make sure you feel assured any information you want to keep confidential is kept confidential," she said.

[This story was originally published by The Bay Area Reporter.]