Back pain patients help refine research via crowdsourcing, registries

Online crowdsourcing and patient-registry recruitment both work as avenues for soliciting input from patients on what aspects of their malady they’d like to see studied—at least when the malady is low back pain.

That’s according to findings published online April 5 in Quality of Life Research.

The multisite study was lead-authored by Anjali Truitt, PhD, of the Surgical Outcomes Research Center at the University of Washington in Seattle. Neuroradiologist Jeffrey Jarvik, MD, MPH, also of the University of Washington, was a co-author.

The team had back-pain sufferers complete a survey ranking their five highest priority topics from a list and supplying additional topics not previously identified.

Analyzing the responses using descriptive statistics and content analysis, the researchers found that the two approaches resulted in similar research priorities by frequency.

“Both provided open-ended responses that were useful, in that they illuminate additional and nuanced research topics,” the authors write.

Meanwhile, both the crowdsourced respondents and the registry cohort leaned toward topics related to diagnosis and treatment over other topics.

As for demographics: The patient registry yielded older (mean age 72.4), mostly White (70 percent) and well-educated (95 percent high school diploma or higher) participants. Crowdsourcing yielded younger (mean age 36.6 years), mostly White (82 percent), and well-educated (98 percent high school diploma or higher) participants.

(The survey response rates and participant counts are unspecified in the study abstract.)

Concluding that patient registry and crowdsourcing are both “feasible recruitment approaches for engagement,” Truitt et al. suggest that researchers would do well to consider their approach, community and resources when choosing their recruitment approach, as “each approach has its own strengths and weaknesses. These approaches are likely most appropriate to supplement or to complement in-person and ongoing engagement strategies.”  

“A cornerstone of patient-centered outcome research is direct patient involvement throughout the research process,” the authors write. “Identifying and prioritizing research topics is a critical but often overlooked point for involvement, as it guides what research questions are asked.”