The Role of People with Lived Experience at Pain Conferences: Progress and Ongoing Challenges

Over the past few years, more pain conferences have recognized the importance of including people with lived experience of pain in their programs. This shift is vital because those of us living with pain bring insights that can’t be found in research papers or clinical guidelines alone. Our stories add depth, humanity, and urgency to the discussions about pain care, research, and advocacy.

However, while progress is being made, attending these conferences often comes with significant challenges. My experience at a recent conference highlighted both the positive strides and the gaps that still need addressing.

Accessibility remains one of the biggest barriers. Many conference venues involve long walks between hotels and event spaces, limited rest areas, uncomfortable seating, and few quiet spaces. For people with chronic pain, fatigue, or mobility issues, these factors can make participation exhausting or even impossible. Organizers need to prioritize accessible venue design, provide shuttle services, ergonomic seating, quiet spaces, and on-site support. Scheduling is also a challenge—long days with back-to-back sessions, early starts, or late events are difficult for those managing pain or energy limits.

Language and respect are another issue. Too often, we’re reduced to acronyms like “PWLE,” which can feel dehumanizing. Saying “people with lived experience of pain” shows respect and recognition of our humanity—something as simple as language can set the tone for inclusion.

Financial barriers are also significant. Many people with chronic pain have limited income due to their health, and travel costs, registration fees, and accommodations can be out of reach. Offering bursaries, reduced fees, or hybrid attendance options is key to ensuring our voices are present.

Meaningful participation must go beyond simply inviting us to attend. Conferences should involve people with lived experience as co-creators, speakers, and advisors from the planning stage onward. Tokenism—where our presence is more symbolic than impactful—still happens too often. True collaboration means valuing lived experience as equal to academic or clinical expertise.

Despite these challenges, our presence at pain conferences is powerful and necessary. We help bridge the gap between science and lived reality, reminding everyone that behind every data point is a person. When conferences actively work to be accessible, inclusive, and collaborative, they create opportunities for real progress.

5 Ways to Make Pain Conferences Truly Inclusive

1. Prioritize Accessibility: Choose venues with minimal walking distances, provide shuttle services, ergonomic seating, quiet spaces, and on-site support for people with mobility or sensory needs.
2. Use Respectful Language: Avoid acronyms like “PWLE” and encourage speakers to use person-first language, such as “people with lived experience of pain.”
3. Offer Financial Support: Provide travel bursaries, discounted registration fees, and hybrid options to reduce financial barriers.
4. Design for Comfort and Flexibility: Include frequent breaks, shorter sessions, accessible food options, and space for attendees to rest or pace themselves.
5. Foster Meaningful Engagement: Involve people with lived experience in planning committees, panels, and presentations from the start, ensuring they are equal contributors rather than token representatives.

The inclusion of people with lived experience of pain at conferences is not just a gesture of goodwill—it’s essential for progress. We bring perspectives that ground research in real-world impact and remind everyone of the human stories behind the science. While there is still work to be done to ensure these spaces are fully accessible and inclusive, every step toward genuine collaboration matters. My hope is that future pain conferences will not only invite us into the room but ensure that the room itself is built for us—accessible, welcoming, and valuing our voices as equal partners. When lived experience and research expertise meet with mutual respect, the potential for meaningful change is limitless.