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 Publisher Pubmed

Davies BM¹ ; Mowforth OD¹ ; Khan DZ¹ ; Yang X¹ ; Stacpoole SRL² ; Hazenbiller O³ ; Gronlund T⁴ ; Tetreault L⁵ ; Kalsiryan S⁶ ; Starkey ML¹ ; Sadler I⁷ ; Sarewitz E⁸ ; Houlton D⁷ ; Carter J⁷ Show All Authors

Davies BM¹
Mowforth OD¹
Khan DZ¹
Yang X¹
Stacpoole SRL²
Hazenbiller O³
Gronlund T⁴
Tetreault L⁵
Kalsiryan S⁶
Starkey ML¹
Sadler I⁷
Sarewitz E⁸
Houlton D⁷
Carter J⁷
Howard E⁹
Rahimimovaghar V¹⁰
Guest JD¹¹
Aarabi B¹²
Kwon BK¹³
Kurpad SN¹⁴
Harrop J¹⁵
Wilson JR¹⁶
Grossman R¹⁷
Smith EK¹⁸
Mcnair AGK¹⁹
Fehlings MG⁵
Kotter MRN^{1, 20}

Source: Trials Published:2021

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. © 2021, The Author(s).

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Experts (# of related papers)

Vafa Rahimi-Movaghar (20)

Vali Baigi (1)

Style	Citing Format
MLA	Davies BM, et al.. "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." Trials, vol. 22, no. 1, 2021, pp. -.
APA	Davies BM, Mowforth OD, Khan DZ, Yang X, Stacpoole SRL, Hazenbiller O, Gronlund T, Tetreault L, Kalsiryan S, Starkey ML, Sadler I, Sarewitz E, Houlton D, Carter J, Howard E, Rahimimovaghar V, Guest JD, Aarabi B, Kwon BK, ... Kotter MRN (2021). 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. Trials, 22(1), -.
Chicago	Davies BM, Mowforth OD, Khan DZ, Yang X, Stacpoole SRL, Hazenbiller O, Gronlund T, et al.. "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." Trials 22, no. 1 (2021): -.
Harvard	Davies BM et al. (2021) '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', Trials, 22(1), pp. -.
Vancouver	Davies BM, Mowforth OD, Khan DZ, Yang X, Stacpoole SRL, Hazenbiller O, et al.. 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. Trials. 2021;22(1):-.
BibTex	@article{ author = {Davies BM and Mowforth OD and Khan DZ and Yang X and Stacpoole SRL and Hazenbiller O and Gronlund T and Tetreault L and Kalsiryan S and Starkey ML and Sadler I and Sarewitz E and Houlton D and Carter J and Howard E and Rahimimovaghar V and Guest JD and Aarabi B and Kwon BK and Kurpad SN and Harrop J and Wilson JR and Grossman R and Smith EK and Mcnair AGK and Fehlings MG and Kotter MRN}, title = {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}, journal = {Trials}, volume = {22}, number = {1}, pages = {-}, year = {2021} }
RIS	TY - JOUR AU - Davies BM AU - Mowforth OD AU - Khan DZ AU - Yang X AU - Stacpoole SRL AU - Hazenbiller O AU - Gronlund T AU - Tetreault L AU - Kalsiryan S AU - Starkey ML AU - Sadler I AU - Sarewitz E AU - Houlton D AU - Carter J AU - Howard E AU - Rahimimovaghar V AU - Guest JD AU - Aarabi B AU - Kwon BK AU - Kurpad SN AU - Harrop J AU - Wilson JR AU - Grossman R AU - Smith EK AU - Mcnair AGK AU - Fehlings MG AU - Kotter MRN TI - 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 JO - Trials VL - 22 IS - 1 SP - EP - PY - 2021 ER -

Style

Citing Format

MLA

Davies BM, et al.. "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." Trials, vol. 22, no. 1, 2021, pp. -.

APA

Davies BM, Mowforth OD, Khan DZ, Yang X, Stacpoole SRL, Hazenbiller O, Gronlund T, Tetreault L, Kalsiryan S, Starkey ML, Sadler I, Sarewitz E, Houlton D, Carter J, Howard E, Rahimimovaghar V, Guest JD, Aarabi B, Kwon BK, ... Kotter MRN (2021). 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. Trials, 22(1), -.

Chicago

Davies BM, Mowforth OD, Khan DZ, Yang X, Stacpoole SRL, Hazenbiller O, Gronlund T, et al.. "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." Trials 22, no. 1 (2021): -.

Harvard

Davies BM et al. (2021) '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', Trials, 22(1), pp. -.

Vancouver

Davies BM, Mowforth OD, Khan DZ, Yang X, Stacpoole SRL, Hazenbiller O, et al.. 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. Trials. 2021;22(1):-.

BibTex

@article{ author = {Davies BM and Mowforth OD and Khan DZ and Yang X and Stacpoole SRL and Hazenbiller O and Gronlund T and Tetreault L and Kalsiryan S and Starkey ML and Sadler I and Sarewitz E and Houlton D and Carter J and Howard E and Rahimimovaghar V and Guest JD and Aarabi B and Kwon BK and Kurpad SN and Harrop J and Wilson JR and Grossman R and Smith EK and Mcnair AGK and Fehlings MG and Kotter MRN}, title = {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}, journal = {Trials}, volume = {22}, number = {1}, pages = {-}, year = {2021} }

RIS

TY - JOUR
AU - Davies BM
AU - Mowforth OD
AU - Khan DZ
AU - Yang X
AU - Stacpoole SRL
AU - Hazenbiller O
AU - Gronlund T
AU - Tetreault L
AU - Kalsiryan S
AU - Starkey ML
AU - Sadler I
AU - Sarewitz E
AU - Houlton D
AU - Carter J
AU - Howard E
AU - Rahimimovaghar V
AU - Guest JD
AU - Aarabi B
AU - Kwon BK
AU - Kurpad SN
AU - Harrop J
AU - Wilson JR
AU - Grossman R
AU - Smith EK
AU - Mcnair AGK
AU - Fehlings MG
AU - Kotter MRN
TI - 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
JO - Trials
VL - 22
IS - 1
SP -
EP -
PY - 2021
ER -

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Abstract