The development of lived experience-centered word clouds to support research uncertainty gathering in degenerative cervical myelopathy: results from an engagement process and protocol for their evaluation, via a nested randomized controlled trial

The development of lived experience-centered word clouds to support research uncertainty gathering in degenerative cervical myelopathy: results from an engagement process and protocol for their evaluation, via a nested randomized controlled trial

Abstract Objectives AO Spine REsearch objectives and Common Data Elements for Degenerative Cervical Myelopathy [RECODE-DCM] is a multi-stakeholder consensus process aiming to promote research efficiency in DCM. It aims to establish the top 10 research uncertainties, through a James Lind Alliance Pri...

Full description

Saved in:
Bibliographic Details
Published in:Current controlled trials in cardiovascular medicine Vol. 22; no. 1; p. 415
Main Authors: Davies, Benjamin M, Mowforth, Oliver D, Khan, Danyal Z, Yang, Xiaoyu, Stacpoole, Sybil R. L, Hazenbiller, Olesja, Gronlund, Toto, Tetreault, Lindsay, Kalsi-Ryan, Sukhvinder, Starkey, Michelle L, Sadler, Iwan, Sarewitz, Ellen, Houlton, Delphine, Carter, Julia, Howard, Evangeline, Rahimi-Movaghar, Vafa, Guest, James D, Aarabi, Bizhan, Kwon, Brian K, Kurpad, Shekar N, Harrop, James, Wilson, Jefferson R, Grossman, Robert, Smith, Emma K, McNair, Angus G.K, Fehlings, Michael G, Kotter, Mark R. N
Format: Journal Article
Language:English
Published: London BioMed Central Ltd 25-06-2021
BioMed Central
BMC
Subjects:
Care and treatment
Caregivers
Cervical
Community-based research
Disc herniation
Health surveys
Medical research
Medicine, Experimental
Methodology
Myelopathy
Online services
OPLL
Polls & surveys
Professionals
Spinal cord
Spinal cord compression
Spondylosis
Stakeholders
Support groups
Word (Linguistics)
Word cloud
United Kingdom
United States > US
California
Online Access:Get full text
Tags: Add Tag
No Tags, Be the first to tag this record!
Description
Summary:Abstract Objectives AO Spine REsearch objectives and Common Data Elements for Degenerative Cervical Myelopathy [RECODE-DCM] is a multi-stakeholder consensus process aiming to promote research efficiency in DCM. It aims to establish the top 10 research uncertainties, through a James Lind Alliance Priority Setting Partnership [PSP]. Through a consensus process, research questions are generated and ranked. The inclusion of people with cervical myelopathy [PwCM] is central to the process. We hypothesized that presenting PwCM experience through word cloud generation would stimulate other key stakeholders to generate research questions better aligned with PwCM needs. This protocol outlines our plans to evaluate this as a nested methodological study within our PSP. Methods An online poll asked PwCM to submit and vote on words associated with aspects of DCM. After review, a refined word list was re-polled for voting and word submission. Word clouds were generated and an implementation plan for AO Spine RECODE-DCM PSP surveys was subsequently developed. Results Seventy-nine terms were submitted after the first poll. Eighty-seven refined words were then re-polled (which added a further 39 words). Four word clouds were generated under the categories of diagnosis, management, long-term effects, and other. A 1:1 block randomization protocol to assess word cloud impact on the number and relevance of PSP research questions was generated. Conclusions We have shown it is feasible to work with PwCM to generate a tool for the AO Spine RECODE-DCM nested methodological study. Once the survey stage is completed, we will be able to evaluate the impact of the word clouds. Further research will be needed to assess the value of any impact in terms of stimulating a more creative research agenda.
Bibliography:ObjectType-Article-2
SourceType-Scholarly Journals-1
ObjectType-Undefined-1
ObjectType-Feature-3
content type line 23
ISSN:1745-6215
1745-6215
DOI:10.1186/s13063-021-05349-8