Researchers at the University of Haifa have launched an innovative collaborative project called PainStory, a website that will offer individuals a safe and secure place to share their experiences with chronic pain.
The initiative aims to break the stigma surrounding chronic pain and help researchers to learn directly from the true experts – chronic pain sufferers themselves. All information shared on PainStory is strictly for research purposes only and will remain confidential.
Chronic pain affects a staggering 20% of the global population, surpassing heart disease, cancer, and diabetes combined – and it is the leading cause of the opioid crisis that has killed many people who overdosed on pain-relieving medications.
Behind these statistics lies the untold suffering experienced by millions of people. As such, PainStory hopes to shed light on the reality of chronic pain by sharing individuals’ personal stories.
“Through this project, we’re exploring a different approach to understanding chronic pain,” said Goldstein, head of the University of Haifa’s iPain Lab. “A doctor has a very specific biomedical focus, filtering out the patient’s emotional experience and suffering.”
The PainStory project is being conducted in collaboration with neuroscience Prof. Tor Wager at Dartmouth College in New Hampshire; Assistant Prof. Yoni Ashar at the University of Colorado; Assistant Prof. Alla Landa at Columbia University in New York; and Assistant Prof. Jonas Tesarz, a senior physician at the General Internal Medicine and Psychosomatics Department at University Hospital Heidelberg in Germany.
“A breakthrough should come from a collaborative approach that places the experiences of people with chronic pain at the forefront. We believe that the key to unlocking breakthrough solutions lies in harnessing the invaluable knowledge and insights of those who live with chronic pain every day.
To this end, we are actively developing psychoeducational materials in four languages and exploring innovative ways to communicate and connect with individuals suffering from chronic pain,” iPain Lab’s Dr. Pavel Goldstein said.
What the platform hopes to achieve
The dedicated digital platform is built to provide a safe and secure space for individuals to share their unique pain narratives. By participating in this initiative, individuals can contribute invaluable information and perspectives that have the potential to transform how researchers and doctors understand and address chronic pain.
By having participants share their stories on the platform, they can help foster a compassionate environment where others can comprehend the true nature of chronic pain, ultimately reducing the stigma surrounding the condition, he continued.
The PainStory project also aims to enhance a multidimensional understanding of chronic pain beyond the magnitude and severity of chronic pain; the shared stories paint a vivid picture of the challenges faced by millions, increasing awareness and advocacy for improved pain management and fighting the global opioid crisis.
“The need to enhance understanding of chronic pain extends even further – to the medical community. Researchers believe it is vital to include the voice of the patient in this process. These stories could lead to the development of innovative approaches that directly address the diverse needs of those suffering from chronic pain,” Goldstein explained. “We want them to know that their story matters and their participation will significantly impact our collective knowledge on this subject. Together, we can create a powerful force for change.”