Toward a digital citizen lab for capturing data about alternative ways of self-managing chronic pain: An attitudinal user study.
Najmeh Khalili-Mahani, Sandra Woods, Eileen Mary Holowka and 2 others
PMID 36188996WHAT IT FOUND
People with chronic pain and their doctors are open to using apps to track how alternative therapies affect them.
They want to share data to improve care but worry about cost, complexity, and whether computers can truly understand their pain.
Key findings
01Most respondents were willing to use health apps for research, with 75% comfortable sharing anonymized data and only 2% refusing.
02Despite high smartphone access, few patients used pain-tracking apps, with less than 20% of those with chronic pain reporting prior use.
03Participants valued the ability to share data with doctors and track sleep above other features, prioritizing comprehensive data collection over strict privacy.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs
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What it does not show
The sample was self-selected, meaning participants were already interested in joining a study about pain apps, which likely overestimates general willingness. The group was predominantly female, educated, and English-speaking with high access to technology, so results may not apply to marginalized populations or those with lower digital literacy. The survey used custom questions rather than validated tools, limiting the ability to compare these attitudes with other studies. Most participants reported lower back pain, so findings may not extend to those with other types of chronic pain.
Declared interests
The study was funded by a grant from the Fonds de recherche du Québec. The authors declared no commercial or financial conflicts of interest.
The easy way to misread this
Do not interpret the high willingness to share data as evidence that patients will actually use pain-tracking apps. Fewer than 20% of respondents had ever used one, and many expressed concerns about cost and complexity, suggesting a gap between attitude and behavior.