Our Journey
Our Journey
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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 3 steps to achieving our goal:
The 3 steps to achieving our goal:
Your voice
Your voice
Our goal: Gathering nationwide public input from 2S/LGBTQQIA+ communities
Our online Citizen Science pain platform is here for you and other individuals from 2S/LGBTQQIA+ communities to share your journeys with pain. Through this platform, you can:
Answer questions about your symptoms with pain
Share your stories and lived experience with pain
Compare your symptoms with those of other people living with chronic pain through data visualizations
The platform asks questions about you, your health needs and conditions, how pain affects you, and your personal journey with pain.
Your input will help SHAPE+ research that focuses on the specific needs and experiences of 2S/LGBTQQIA+ communities, people like you.
Co-develop research questions
Co-develop research questions
Our goal: Co-develop research questions related to pain through group discussion workshops
A small group of your peers from 2S/LGBTQQIA+ communities, including the public, patients, clinicians, and researchers, will participate in virtual discussions. Through these discussions, we will work together to co-develop research questions related to chronic pain that better reflect the needs of 2S/LGBTQQIA+ communities.
These questions will then be shared back with you for your input.
Prioritize the questions together
Prioritize the questions together
Our goal: Co-prioritize the questions through nationwide public input
Our goal: Co-prioritize the questions through nationwide public input
You, along with additional 2S/LGBTQQIA+ individuals who experience pain, can give feedback on the research questions created in Step 2, all from the comfort of your home.
The process starts with an anonymous questionnaire, where you can rate how important and useful each question is. The study team will then review everyone's feedback and update the questions.
This process will be repeated until there is a clear agreement on the priority questions.
Our roadmap to success
Our roadmap to success
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