Our Journey
Our Journey
Embedded Files
Pain affects many people, yet is complex and is poorly understood.
Our goal is to work together with the public to better understand how pain affects people from queer and trans communities by developing research questions informed by the community's needs and priorities through citizen science.
This research is led by and for 2S/LGBTQQIA+ communities, with your active involvement at different stages of the process to SHAPE+ research.
Four disabled people of color gather around a table during a meeting. A Black woman sitting on a couch speaks with a neutral expression while the three others (a South Asian person sitting in a wheelchair and taking notes, a Black non-binary person sitting in a chair with a tablet and cane, and a Black non-binary person standing with a clipboard) listen. Photo from Disabled and Here.
The 2 steps to achieving our goal:
The 2 steps to achieving our goal:
Phase 1 is now complete
Phase 1: Your Voice
Phase 1: Your Voice
Our goal: Gathering nationwide public input from 2S/LGBTQQIA+ communities
Our online Citizen Science pain platform provided a space for individuals from 2S/LGBTQIA+ communities to share their journeys with pain. Through this platform, participants could:
Answer questions about their symptoms related to chronic pain
Share their stories and lived experience with chronic pain
Compare their experiences with those of other people living with chronic pain through data visualizations
The platform asked questions about participants, their health needs and conditions, how pain affects them, and their personal journey with pain.
Their input is now helping SHAPE+ research that focuses on the specific needs and experiences of 2S/LGBTQQIA+ communities.
Co-develop research questions
Co-develop research questions
Our goal: Co-develop and prioritize research questions related to chronic pain
2S/LGBTQIA+ people with personal or caregiving experience of chronic pain, as well as clinicians and researchers with chronic pain expertise, will help us co-develop research questions that better reflect the needs of 2S/LGBTQIA+ communities.
Participants will first review what we learned during Phase 1 and share their ideas about what future research should address. They can participate independently online or during one of two optional Zoom sessions.
After the ideas have been collected, approximately 40 participants will be invited to organize the proposed research questions into related groups, rate how important and practical they are, and review how the questions have been organized.
Together, these activities will help identify priorities for future chronic pain research.
Page updated
Google Sites
Report abuse