JMIR Publications

ABSTRACT

Background:

Patient perspectives are central to the U.S. Food and Drug Administration’s benefit-risk decision-making process in the evaluation of medical products. Traditional channels of communication may not be comfortable for all patients and consumers. Social media websites have increasingly been recognized by researchers as a means to gain insights on patients’ views about treatment and diagnostic options, the healthcare system, and their experiences living with their conditions. Utilizing multiple patient perspective data sources offers the FDA the opportunity to capture diverse patient voices and experiences with chronic pain.

Objective:

To explore diverse patient perspectives, a pilot study was conducted to examine posts from INSPIRE’s own patient platform and several social media platforms to gain insights into the key challenges and barriers faced by chronic pain patients.

Methods:

This research compiles and analyzes unstructured patient data to draw out the key voice of the patient themes. To extract relevant posts for this study, predefined keywords were identified. Harvested posts were published between January 1, 2017 and October 22, 2019.

Results:

The most common topics discussed among CPPs were disease burden, support and advocacy needs, and proper diagnosis. The two most frequently discussed treatments were opioids or narcotics, and devices such as transcutaneous electrical nerve stimulation machines and spinal cord stimulators.

Conclusions:

Success in pain reduction was tempered by concerns of stigmatization regarding opioid addiction and dependency. The study illustrates how social listening data may provide valuable insights into diverse patient perspectives, preferences, and unmet needs, especially for conditions that may be perceived as stigmatizing.   Clinical Trial: Not applicable