Editor’s note: The third North American Pain School (NAPS) took place June 24-28, 2018, in Montebello, Quebec, Canada. An educational initiative of the International Association for the Study of Pain (IASP) and Analgesic, Anesthetic, and Addiction Clinical Trial Translations, Innovations, Opportunities, and Networks (ACTTION), and presented by the Quebec Pain Research Network (QPRN), NAPS brings together leading experts in pain research and management to provide 30 trainees with scientific education, professional development, and networking experiences. Six of the trainees were also selected to serve as PRF-NAPS Correspondents, who provided firsthand reporting from the event, including interviews with NAPS’ six visiting faculty members and summaries of scientific sessions, along with coverage on social media. (Applications are now being accepted for the 2019 NAPS and for the PRF-NAPS Correspondents program; the application deadline is March 4, 2019. Learn more here.)
The 2018 version of NAPS also featured two patient representatives, Leslie Levine and Jacques Laliberté (see below for biographical information), who each sat downfor a podcast interview with PRF-NAPS Correspondent Natalie Osborne, a PhD student at Krembil Research Institute, University of Toronto, Canada. They spoke about their experiences with chronic pain, their advocacy efforts, and the importance of including patients as partners in pain research. Listen to the podcast below. A PDF of the transcript is available below as well. (This podcast is part of a Pain 101 podcast series for PRF and its companion site RELIEF with Osborne and her co-host Alexander Tuttle, PhD, a postdoctoral fellow at the University of North Carolina at Chapel Hill, US.)
Leslie Levine has an AB from Princeton, a VMD and PhD from the University of Pennsylvania, and a JD from Harvard Law School. She worked in medical research and as a biomedical patent attorney at universities and pharmaceutical companies before she became ill with a rare form of immunodeficiency and autoimmune neuropathy. Leslie is now a prominent pain patient advocate, serving on the board of directors of two national neuropathy organizations and as a patient peer reviewer for Cochrane Reviews, as well as leading a large neuropathy patient support group. In addition, she works closely with the Patient-Centered Outcomes Research Institute (PCORI).
Jacques Laliberté is the founding director of the Québec Association for Chronic Pain (AQDC in French, for the Association Québécoise de la Douleur Chronique). The AQDC is a nonprofit organization aimed at improving the lives of people suffering from chronic pain in Québec. It works with academic centers of expertise in chronic pain as well as government to create a continuum of patient care. Laliberté is also the Executive Committee Patient co-Chair for the Canadian Institutes of Health Research (CIHR) Strategy for Patient-Oriented Research (SPOR) Chronic Pain Network. A retired oil industry executive and business consultant, he became an advocate for pain patients after his own experience with chronic pain following a snowboarding accident in 2003. Laliberté has also served as director for the Canadian Pain Coalition (2012-2017) and was a member of the steering committee for the Canadian Pain Strategy (2011).
For patients
If you’re a researcher who’d like to include patients in your next project, or a patient who’d like to become involved in pain research, there are a variety of resources available to do so. In the US, visit here for a step-by-step rubric on involving patients in research. In Canada, visit the Patient Engagement Framework provided by CIHR’s Strategy for Patient-Oriented Research (SPOR) network.
Podcast music credit—Artist: Geographer. Track: “Bright Idea,” from YouTube Audio Library.