Abstract
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.
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Acknowledgements
In memory of Mary Roberts Scott, our Patient Partner, for her partnership and contributions to the project’s design, conduct, and analysis. We would also like to acknowledge Muhammad Ghauri, Sofya Malashanka, Jordan Tuia, and Sierra Widmer-Rodriguez for their assistance, as well as our participants who made this work possible.
Funding
This project was supported by Contract Number ME-1310-07328 from the Patient-Centered Outcomes Research Institute (PCORI). REDCap was funded by NCRR/NIH (UL1TR000423).
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ART, SEM, ALA, DRN, SOL, ZB, TCE, DLP, and DCL have no conflict to disclose. BAC is a Cofounder of C-SATS Inc., which developed an online system for appraising technical skills and technique through crowdsourcing. The present work was not affiliated with C-SATS. JGJ is a Consultant to HealthHelp, received royalties from Springer as a Co-Editor of Evidence-based Neuroimaging, and has intellectual property and is a Founder and Stockholder of PhysioSonic.
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All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.
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Informed consent was obtained from all individual participants included in the study.
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Truitt, A.R., Monsell, S.E., Avins, A.L. et al. Prioritizing research topics: a comparison of crowdsourcing and patient registry. Qual Life Res 27, 41–50 (2018). https://doi.org/10.1007/s11136-017-1566-9
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DOI: https://doi.org/10.1007/s11136-017-1566-9