Prioritizing research topics: a comparison of crowdsourcing and patient registry.
Truitt A, Monsell S, Avins A, Nerenz DR, Lawrence S, Bauer Z, Comstock B, Edwards T, Patrick D, Jarvik J, Lavallee D. Prioritizing research topics: a comparison of crowdsourcing and patient registry.. Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation 2018; 27(1):41-50.
Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation
PURPOSE: A cornerstone of patient-centered outcome research is direct patient involvement throughout the research process. Identifying and prioritizing research topics is a critical but often overlooked point for involvement, as it guides what research questions are asked. We assess the feasibility of involving individuals with low back pain in identifying and prioritizing research topics using two approaches: an existing patient registry and an online crowdsourcing platform. We compare and contrast the diversity of participants recruited, their responses, and resources involved.
METHODS: Eligible participants completed a survey ranking their five highest priority topics from an existing list and supplying additional topics not previously identified. We analyzed their responses using descriptive statistics and content analysis.
RESULTS: The patient registry yielded older (mean age 72.4), mostly White (70%), and well-educated (95% high school diploma or higher) participants; crowdsourcing yielded younger (mean age 36.6 years), mostly White (82%), and well-educated (98% high school diploma or higher) participants. 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. Overall, both approaches suggest a preference towards topics related to diagnosis and treatment over other topics.
CONCLUSION: Using a patient registry and crowdsourcing are both feasible recruitment approaches for engagement. Researchers should 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.
Medical Subject Headings
Adult; Aged; Aged, 80 and over; Comparative Effectiveness Research; Crowdsourcing; Female; Humans; Male; Middle Aged; Quality of Life; Registries; Research Design; Surveys and Questionnaires; Young Adult