Taylor Schell Martinez
CASE STUDY
Designing Technology to Support Health Information and Services Seeking for the LGBTQIA+ Community
THE CHALLENGE
There were three questions I was trying to answer:
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Do digital sources provide those who identify as LGBTQIA+ with reliable, accurate, and inclusive health information and services that cover all their needs as LGBTQIA+ individuals?
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​Could collecting and using LGBTQIA+ identity information as part of the electronic health record improve interactions with healthcare providers, provide more holistic healthcare, and increase accessibility to health information and services for the LGBTQIA+ community?
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Could new or improved technologies help enrich LGBTQIA+ individuals’ health information seeking experiences and access to health services, as well as facilitate patient-provider interactions?
THE GOALS
There were three goals of this research project:
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Identify the challenges and barriers LGBTQIA+ individuals experienced when seeking health information and accessing health care services.
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Use findings to inform the design of new or improved technological solutions to alleviate the identified challenges.
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ULTIMATE GOAL: Improve health information, services, and technologies accessibility and inclusivity for the LGBTQIA+ community.
Who I worked with:
Supervisor (feedback)
My Role:
UX Research
Research Methods:
Competitor Analysis
Secondary Research
Survey
In-depth Interviews
Tools Used:
Qualtrics
Zoom
Draw.io
MS Excel
MS Word
Design Process
COMPETITIVE ANALYSIS
Exploring the online LGBTQIA+ health information resources available to the community
A quick search online for "LGBT health" returned very few LGBT health-related results, with the CDC's Lesbian, Gay, Bisexual and Transgender Health Page at the top of the list. The LGBT National Help Center was next, this site provides hotlines to call for information, it was not a health site. The other results returned were a mix of reproductive health - usually focused on STIs and HIV/AIDS, dating, and social networking. I expanded the search to include more nuanced terms like 'gay', 'lesbian', 'trans', 'transgender', 'bisexual' combined with 'health', 'healthcare', 'health care', or 'medical',
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I also searched the Google Play Store for the same term combos, only reproductive health, dating, and social networking apps were returned there too. Narrowing it down to 'lesbian health' resulted in a single "Lesbian Health" App but its sole focus was reproductive health and STIs for lesbians.
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PROBLEM EXPERIENCED:
There were no comprehensive LGBTQIA+ health information websites or Android apps that were easily accessible by searching Google Chrome or Google Play Store to be able to conduct a full competitive analysis, highlighting a gap in the accessibility of health information for the LGBTQIA+ community.
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SECONDARY RESEARCH - LITERATURE REVIEW
Exploring the LGBTQIA+ health information sources available
The next step was to research peer-reviewed literature and previous studies to understand what had already been done in relation to designing health technology and mobile apps for the LGBTQIA+ community and where there may be gaps. Again, there was not much to be found. I began my search using the umbrella term LGBTQ, "lgbtq" AND "healthcare" AND "technology" . All the results were focused on specific diseases, disparities, or sexual health, None discussed general or holistic healthcare technologies for the LGBTQIA+ community. Even when I became more specific and searched "gay" AND " healthcare" AND "technology", it was not until the twentieth result that one involved developing healthcare technology, specifically a mobile app to facilitate vaccinations in men who have sex with men.
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I decided to investigate what the literature said about collecting sexual orientation and gender identity information for the electronic health records to see what was recommended and if best practices had been developed. It became quickly evident that for almost a decade, many health institutions were advocating the importance of the collection and use of these variables with not much success. No best practices were found, as were no standards for inclusion.
According to the literature, several design implications arose in relation to the collection and use sexual orientation, gender identity, pronouns, and preferred name information by health professionals and technologies.
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Changing the language increased LGBTQIA+ inclusivity without being central to the design
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Allowed optimization of health care provision and quality
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Identification underpins health care customization
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Uncollected identifiers compound data inaccuracies
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Opportunity to normalize collecting LGBTQIA+ identifiers as routine
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Reduces disparities
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Reduces discrimination
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Missed opportunities with a virtually untapped market
After learning the importance of collecting this information, I felt I needed to better understand if health professionals and technologies were finally collecting and using this information, and how LGBTQIA+ patients felt about the collection and use of these identity variables.
Read the full literature review Design Implications for Health Technology to Support LGBTQ+ Community: a literature review published at 2020 Pervasive Health here.
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Design Research
SURVEYS
Understanding the LGBTQIA+ Individual's Health Experience
I conducted a survey via Qualtrics of LGBTQIA+ individuals to understand what resources were being used for what types of health information and to gain a deeper understanding of their experience with health information, services, and professionals. In accordance with university rules when working with human subjects, I applied for and secured IRB approval prior.
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Both qualitative and quantitative data were collected through 70 close-ended questions and 19 short, open-ended questions to elicit information about respondents
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Demographics
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LGBTQIA+ identity
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Health information seeking behaviors
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Health insurance access
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Prescription drug access.
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Mental health and primary care access and experiences
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Technology use
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There were 155 completed surveys using the question set found here.
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Descriptive statistics were used to analyze the quantitative data. Bivariate analysis was then conducted between the general population and our LGBTQIA+ respondents. Affinity diagramming was conducted using draw.io to analyze the qualitative narrative data to identify emerging themes.
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From the surveys it became clear that LGBTQIA+ individuals used different strategies for different types of health information, they were not equally seeking general and LGBTQIA+ health information from their health professionals. I wanted to understand why. It was also clear that LGBTQIA+ individuals were still being discriminated against significantly in the health care setting and experiencing many challenges that further impacted accessibility.
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PROBLEMS THAT AROSE AND LESSONS LEARNED:
Due to COVID-19 restrictions enacted by the university my methods for recruiting and research were limited to virtual only. This impacted our results as only those with Internet access and who felt tech savvy enough to take the survey were able to participate.
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I did not limit respondents to the United States and I did not collect location in the survey, which I later regretted. Qualtrics collected the IP country of origin but that may not accurate due to VPNs and other things that may distort location. I did collect this information in the interviews.
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Once the survey launched I was quickly informed that pronouns are not 'preferred' and using that language when asking for a person's pronouns implies they are optional for people to use, they are not. I removed the term 'preferred' from the survey question.
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I noticed I was getting a lot of incomplete surveys. I reviewed analytics on Qualtrics to see if I could see a trend of what was happening. I noticed I was losing participants at one specific question, a long matrix question asking about their experience with many aspects of health. It seemed I was losing participants at a question they felt was too long and/or overwhelming. I broke the question into several shorter separate categories with only 4 or 5 questions in each. Same questions, just in smaller groupings not one long list and that eliminated the loss of participants mid way through. Lesson learned, no long lists, keep it simple.
IN-DEPTH INTERVIEWS
Understanding the LGBTQIA+ Individual's Health Experience
I decided the best way to understand how to improve accessibility was to interview members of the LGBTQIA+ community about their experiences, challenges, and desires with the health industry and ways to improve their experience.
I created a semi-structured guide of qualitative questions that expanded on the survey questions to facilitate the interviews. LGBTQIA+ interviewees were asked broad, open-ended questions about how they sought health information and services, their interactions with their various healthcare providers, the health technologies they use, experiences with health insurance, barriers and discrimination experienced within the healthcare setting and if their health needs were being met.
The in-depth interviews lengths ranged from 30 to 90 minutes, were audio and video recorded via Zoom. As with the surveys, not all questions were answered by each interviewee; questions may have been skipped based on earlier responses. I moderated all 29 remote interviews.
After transcript verification and prep, I affinity mapped the narrative data in Miro to analyze the qualitative narrative data to identify emerging themes.
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PROBLEMS THAT AROSE AND LESSONS LEARNED:
Again, the COVID-19 restrictions enacted by the university and the study's IRB status limited my methods for recruiting and research to virtual only. This impacted my results as only those with Internet access and who comfortable to participate in a Zoom interview participated. If I were to do this without the limiting factors I would have went in person to local clubs and organizations to get less tech savvy participants.
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I did limit interviewees to the United States. To minimize back and forth during recruitment and scheduling, I directed those who wanted to participate to a scheduler I created on Qualtrics that also acted as a preliminary screener to verify they met specific criteria to participate: identified as LGBTQIA+, were over 18 years of age and lived in the United States. This also provided me with their IP address's location to verify. Developing these automatic processes streamlined recruitment and scheduling.
Design Strategy
ACTIONABLE INSIGHTS
What did I find that could improve health information and services access for the LGBTQIA+ community?
Several design implications were identified involving the Internet and electronic medical records that would improve health information and services access to the LGBTQIA+ community.
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Internet
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Several features on social media need to be improved for better health information access and sharing.
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Better promotion and education of Voice Assistants’ technology capabilities.
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Provide mechanisms to ensure credibility of online LGBTQIA+ health information.
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Develop user-friendly, credible, and accessible LGBTQIA+ focused health website.
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Create national directory of LGBTQIA+ knowledgeable healthcare providers.
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Create digital seal of inclusivity, for knowledgeable health professionals to use.
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Digital education to healthcare providers about LGBTQIA+ community’s health needs.
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Electronic Medical Record (EMR)
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Patients prefer to input their own information through patient portal at own convenience.
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Collection and use of more nuanced LGBTQIA+ identifiers to improve care
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Develop more robust choice list and fill-in option for gender identity (or sex) to make the EHR more inclusive.
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