![Aerial city view](/sites/g/files/omnuum10826/files/styles/hwp_21_9__1920x825/public/datasmart/files/grant-powers-qthxqtfypdm-unsplash.jpg?itok=cdEW323O) # Integrating Dignity into Data Collection Boston's New Inclusive Data Collection Standards October 22, 2024 [ Betsy Gardner ](/betsy-gardner) The city of Boston knows the power of language, and this year city leaders have embarked on a [transformative process to develop inclusive language and data standards](https://www.boston.gov/news/mayor-michelle-wu-announces-new-disability-data-standards-city-boston) that count all residents in the way they want to be counted. According to Boston’s Director of Tech Governance and Policy aleja jimenez jaramillo, “the intention is that everyone has a more dignified experience when they interact with the city government.” As city data is the core of Data-Smart City Solutions, the changes underway in Boston are important to share with other cities and provide lessons that apply across a broad spectrum of data-driven policy making. ## Understanding and Addressing Identity The city’s Department of Innovation and Technology (DOIT) started the inclusive data standard work in the fall of 2022 with a focus on gender-inclusive language, as part of “a broader city initiative to more accurately understand our communities across many demographics,” said Andrea Sarah Patton, chief of staff for the city’s Mayor's Commission for Persons with Disabilities. During the first phase of this process jaramillo, who at that time was a fellow working with Boston’s Chief Digital Officer Julia Gutiérrez, helped run focus groups with the LGBTQ community and gender non-conforming Bostonians. In collaboration with the Mayor's Office of LGBTQ+ Advancement, they sought to understand how people wanted to be asked about their gender identity. According to jaramillo, who started at DOIT full-time in August 2023, these focus groups opened an interesting conversation about when and why the city is asking about gender at all. “The long and short of it is that we ask when it's needed to deliver those services,” they said, “but we also got into the experience of being asked and where gender comes up in receiving core city services.” Both jaramillo and Patton emphasized that, for many people, having the public sector affirm their gender identity can be an impactful experience. These learnings were brought back to the city employees, including the idea that “if you're a city service asking about gender data, here are ways to make sure you're asking for good reasons — if you even have to — and [here's the standard that we recommend you use](https://docs.google.com/document/d/1NadQqskAcrxPCPVhzKOwv89Rgu_Oft_8QfzZR4A5tAw/edit#heading=h.vcysbamfcfq),” said jaramillo. There is also guidance for city staff that need to map the new, city-specific gender data standards onto existing federal and/or state requirements. The research protocol and data consent plan developed for this gender-inclusive sprint were transferable to the next phase of this work, which looked at disability data standards. For Patton, this was incredibly necessary work, as the US Census Bureau had recently proposed changes to how they measure disability as part of the American Community Survey (ACS). While the disability community has long highlighted the poor methods for ACS disability data collection as it’s rigidly based on an impairment model, the proposed changes did not meet the needs of the community and in fact [would exclude many Americans with disabilities](https://www.ncd.gov/letters/2023-12-19-ncd-letter-to-census-on-proposed-change-to-disability-questions-in-american-community-survey/). Without a dynamic model for data collection that included disabilities like mental health disorders, or that accounts for usage of assistive devices, many folks would be eliminated from the conversation and could lose access to government assistance. While the team in Boston couldn’t effect federal changes, they knew that they could enact changes to the Boston disability data standards based on the success of the gender-inclusion work. Patton turned to jaramillo and the rest of the DOIT team to help kick this off; her team also went directly to the community, working with the [Disability Policy Consortium](https://www.dpcma.org/) as a local research partner. The city held a mix of virtual and in-person sessions — all accessible — to hear from folks living with disabilities and learn how the city could better understand, and improve, their experience with city government services. As with gender identity data, one aspect is understanding if this data even needs to be requested. However, Patton and her team needed to make sure that all departments continued to be in line with the Americans with Disabilities Act (ADA) which does require asking about reasonable accommodations, e.g. providing wheelchair access and accessible parking for a city-hosted event. The final [Disability Guidelines and Standards for City of Boston Services](https://www.boston.gov/sites/default/files/file/2024/07/Disability%20Guidelines%20and%20Standards%20for%20City%20of%20Boston%20Services%207.25.24.pdf) document provides information to help city employees navigate this; for example, it states that “disability data should only be linked to personally identifiable information when absolutely necessary, like for a program qualification or reasonable accommodation.” For both standards, it’s crucial to be transparent about why this data is being collected. This data work is also internal, so in addition to guiding how the city communicates and works with constituents it serves as an internal tool for the city as an employer. “There is substantial internal work around our people operations software,” said jaramillo, “and we're working to ensure that folks can use their chosen name and not just legal name on, for example, their \[city email\] system.” And Patton confirmed that any disability data collected during the city’s hiring process is fully separated from the candidates application to. “We want to understand the big picture of whether our workforce represents our community. Whether to disclose a disability to a supervisor or manager is always left to the individual employee to decide.” ## Advice for Other Cities Already, other local governments have reached out to jaramillo and Patton to ask about this work. They provided the following lessons learned during this process. - Double check if that information is necessary. For Patton the biggest change was “not asking anymore!” Examining and reworking the data standards led to a lot of reflection on when, if at all, the city even needed data on gender or disability. - Work parallel with internal employees and external constituents. Patton and jaramillo know the city has dual roles as local government and employer, so it made sense for their work to encompass both internal and external data collection. This can also help employees better understand the experiences of constituents. - Consider how to map to federal/state guidelines. In some cases, using state or federal data standards to collect data is unavoidable. However, the new data standards outline multiple ways to work within these guidelines and how to utilize a harm-reduction method when collecting data. - Switch from medical model to social model of disability. Patton [recommends that cities move away from the medical model](https://www.tandfonline.com/doi/full/10.1080/09687599.2023.2255926#abstract), which views disability as an individual impairment, to the social model, which views disability through the lens of societal barriers. The way that cities think — from the very beginning — about collecting data is just as important as the data that comes from that collection. “It’s a relatively minor switch in terms of the practice of data collection,” said jaramillo, “\[it’s\] more about the experience that it enabled someone to have.” ## About the Author ### Betsy Gardner ![Headshot of Betsy Gardner](/sites/g/files/omnuum10826/files/styles/hwp_1_1__100x100_scale/public/2025-05/Betsy%20Headshot%20resize.jpg?itok=k2OsSp1g) Betsy Gardner is the editor of Data-Smart City Solutions and the producer of the Data-Smart City Pod. Prior to this, Betsy worked in a variety of roles in higher education, focusing on deconstructing racial and gender inequality through research, writing, and facilitation. She also researched government spending and transparency at the Lincoln Institute of Land Policy. Betsy holds a master’s degree in Urban and Regional Policy from Northeastern University, a bachelor’s degree in Art History from Boston University, and a graduate certificate in Digital Storytelling from the Harvard Extension School. See also:- [ Civic Data ](/topics/civic-data) - [ Equity ](/topics/equity) Share on:- [ Facebook ](#) - [ Twitter ](#) - [ Linkedin ](#)