Increasing the Visibility of LGBTQ+ Older Adults in Research
LGBTQ+ Older Adults are rarely included in research exploring overall LGBTQ+ health disparities and improvements in health care delivery. The limited research on the needs of LGBTQ+ Older Adults specifically shows that this population frequently faces barriers to accessing healthcare, leading to higher rates of chronic disease, disability, and social isolation. To address these health disparities, there is a critical need for more patient-centered clinical effectiveness research (CER) among LGBTQ+ Older Adults.
Patient-centered CER is research that focuses on outcomes that matter most to patients and their care teams, including quality of life, symptom relief, and day-to-day functioning, rather than relying solely on clinical metrics that may not reflect patients lived experiences. CER compares two or more different treatments, tests, or devices to see how their risks and benefits affect patients. It also meaningfully engages patients, caregivers, and the broader healthcare community throughout the research process, giving them a voice in identifying research priorities and shaping how findings are shared and applied to care. Ultimately, this approach generates practical, relevant findings that can be readily incorporated into clinical practice settings nationwide. For LGBTQ+ Older Adults whose healthcare needs and lives are routinely underrepresented in research, this provides an inclusive and comprehensive way to recognize and address their healthcare needs.
To increase CER research and ultimately reduce health disparities among LGBTQ+ Older Adults, Howard Brown partnered with the Patient-Centered Outcomes Research Institute (PCORI) on a two-year research project that explored the healthcare needs and research priorities of LGBTQ+ older adult’s populations in Chicagoland.
The project focused on four main goals:
1. Create an LGBTQ+ older adult Patient-Centered Learning Collaborative: The research team prioritized the creation of an inclusive, patient-centered Learning Collaborative (LC) made up of LGBTQ+ Older Adults. The project recruited nine LGBTQ+ identified Older Adults who were 50 and above. There was a focus on recruiting trans and people of color Older Adults. We would consistently over the two-year project work with 7-8 LC members, three of who identified as trans, two who identified as people of color, and the youngest was 51, the oldest 75.
The LC worked with the research team hand-in-hand to guide capacity building activities and tool development over the life of the project. It was critical to utilize and elevate the LC’s lived experience and expertise to ensure that deliverables were meaningful to the community.
2. Identify LGBTQ+ Older Adults Health Research Priorities: The research team along with the LC conducted focus groups to identify health research priorities for LGBTQ+ Older Adults patients. We ran six focus groups with 21 LGBTQ+ Older Adults across Chicagoland to gather more data on the health research topics important to their care.
Upon completion of several cycles of rapid qualitative analysis, the project team and LC members identified six broad domains that described collected themes, subthemes, and influencers in LGBTQ+ older adult health and patient-centered CER. These included; Aspects of Health and Wellbeing, Self-Advocacy and Health Information Research, Accessing Care which includes themes that focus on safety and characteristics that LGBTQ+ Older Adults would like to see in their providers and healthcare systems, Interpersonal Connection addresses multiple areas of concern related to isolation and the need for LGBTQ+ Older Adults to develop vital support networks. LGBTQ+ older adult health Research Priorities, and Engagement in Research which highlights how to engage LGBTQ+ Older Adults in research when there is a long-standing mistrust of institutions that traditionally conduct this research. This led to the development of a white paper identifying health disparities and needs for LGBTQ+ Older Adults to help guide researchers and healthcare providers that care for this population.
3. Develop and Test Patient-Centered CER Capacity Building Tools: The research team and the LC held a series of workshops with over 30 participants including patients, healthcare providers and medical students to explain the effectiveness of CER and how it can be used to advance LGBTQ+ older adult health research priorities. From those workshops, we created a series of tools to help prepare patients and providers to participate in patient-centered CER. These tools will help LGBTQ+ Older Adults, and their providers feel more confident and prepared to be part of research that truly centers LGBTQ+ Older Adults.
4. Disseminate Research Results Widely to Benefit Community: The team is now working to share our project outcomes, including the publication of both the white paper and the tools we developed so others can use them to improve health research and healthcare for LGBTQ+ Older Adults.
After two years, this project reached its close in July 2026. This project was able to highlight how lacking research focused on health disparities for LGBTQ+ Older Adults is. Or how LGBTQ+ Older Adults themselves define the outcomes that matter most. Utilizing tools like CER for identifying LGBTQ+ Older Adults research needs, engaging community members, provider and medical students in CER can help address these gaps by illuminating how these experiences affect daily life, relationships, independence, dignity, and quality of life, while recognizing the diversity of LGBTQ+ Older Adults rather than treating them as a single, uniform population. We would like to the Learning Collaborative for their unwavering commitment to this project. We would like to thank PCORI and all our stakeholders and partners for supporting this project.
To find out more about this project you can read the white paper or access the following documents for download in our toolkit: