Lived Experience-Centred Word Clouds May Improve Research Uncertainty Gathering in Priority Setting Partnerships

Lived Experience-Centred Word Clouds May Improve Research Uncertainty Gathering in Priority Setting Partnerships Publisher Pubmed

Mowforth OD¹ ; Burn L¹ ; Khan DZ¹ ; Yang X¹ ; Stacpoole SRL² ; Gronlund T³ ; Tetreault L⁴ ; Kalsiryan S⁵ ; Starkey ML¹ ; Sadler I⁶ ; Sarewitz E⁷ ; Houlton D⁶ ; Carter J⁶ ; Howard P⁸ Show All Authors

Mowforth OD¹
Burn L¹
Khan DZ¹
Yang X¹
Stacpoole SRL²
Gronlund T³
Tetreault L⁴
Kalsiryan S⁵
Starkey ML¹
Sadler I⁶
Sarewitz E⁷
Houlton D⁶
Carter J⁶
Howard P⁸
Rahimimovaghar V⁹
Guest JD¹⁰
Aarabi B¹¹
Kwon BK¹²
Kurpad SN¹³
Harrop J¹⁴
Wilson JR⁴
Grossman R¹⁵
Smith EK¹⁶
Mcnair A¹⁷
Fehlings MG⁴
Kotter MRN^{1, 18}
Davies BM¹

Source: BMC Medical Research Methodology Published:2023

Abstract

Introduction: AO Spine RECODE-DCM was a multi-stakeholder priority setting partnership (PSP) to define the top ten research priorities for degenerative cervical myelopathy (DCM). Priorities were generated and iteratively refined using a series of surveys administered to surgeons, other healthcare professionals (oHCP) and people with DCM (PwDCM). The aim of this work was to utilise word clouds to enable the perspectives of people with the condition to be heard earlier in the PSP process than is traditionally the case. The objective was to evaluate the added value of word clouds in the process of defining research uncertainties in National Institute for Health Research (NIHR) James Lind Alliance (JLA) Priority Setting Partnerships. Methods: Patient-generated word clouds were created for the four survey subsections of the AO Spine RECODE-DCM PSP: diagnosis, treatment, long-term management and other issues. These were then evaluated as a nested methodological study. Word-clouds were created and iteratively refined by an online support group of people with DCM, before being curated by the RECODE-DCM management committee and expert healthcare professional representatives. The final word clouds were embedded within the surveys administered at random to 50% of participants. DCM research uncertainties suggested by participants were compared pre- and post-word cloud presentation. Results: A total of 215 (50.9%) participants were randomised to the word cloud stream, including 118 (55%) spinal surgeons, 52 (24%) PwDCM and 45 (21%) oHCP. Participants submitted 434 additional uncertainties after word cloud review: word count was lower and more uniform across each survey subsections compared to pre-word cloud uncertainties. Twenty-three (32%) of the final 74 PSP summary questions did not have a post-word cloud contribution and no summary question was formed exclusively on post-word cloud uncertainties. There were differences in mapping of pre- and post-word cloud uncertainties to summary questions, with greater mapping of post-word cloud uncertainties to the number 1 research question priority: raising awareness. Five of the final summary questions were more likely to map to the research uncertainties suggested by participants after having reviewed the word clouds. Conclusions: Word clouds may increase the perspective of underrepresented stakeholders in the research question gathering stage of priority setting partnerships. This may help steer the process towards research questions that are of highest priority for people with the condition. © 2023, The Author(s).

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Experts (# of related papers)

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Style	Citing Format
MLA	Mowforth OD, et al.. "Lived Experience-Centred Word Clouds May Improve Research Uncertainty Gathering in Priority Setting Partnerships." BMC Medical Research Methodology, vol. 23, no. 1, 2023, pp. -.
APA	Mowforth OD, Burn L, Khan DZ, Yang X, Stacpoole SRL, Gronlund T, Tetreault L, Kalsiryan S, Starkey ML, Sadler I, Sarewitz E, Houlton D, Carter J, Howard P, Rahimimovaghar V, Guest JD, Aarabi B, Kwon BK, Kurpad SN, ... Davies BM (2023). Lived Experience-Centred Word Clouds May Improve Research Uncertainty Gathering in Priority Setting Partnerships. BMC Medical Research Methodology, 23(1), -.
Chicago	Mowforth OD, Burn L, Khan DZ, Yang X, Stacpoole SRL, Gronlund T, Tetreault L, et al.. "Lived Experience-Centred Word Clouds May Improve Research Uncertainty Gathering in Priority Setting Partnerships." BMC Medical Research Methodology 23, no. 1 (2023): -.
Harvard	Mowforth OD et al. (2023) 'Lived Experience-Centred Word Clouds May Improve Research Uncertainty Gathering in Priority Setting Partnerships', BMC Medical Research Methodology, 23(1), pp. -.
Vancouver	Mowforth OD, Burn L, Khan DZ, Yang X, Stacpoole SRL, Gronlund T, et al.. Lived Experience-Centred Word Clouds May Improve Research Uncertainty Gathering in Priority Setting Partnerships. BMC Medical Research Methodology. 2023;23(1):-.
BibTex	@article{ author = {Mowforth OD and Burn L and Khan DZ and Yang X and Stacpoole SRL 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 P 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 A and Fehlings MG and Kotter MRN and Davies BM}, title = {Lived Experience-Centred Word Clouds May Improve Research Uncertainty Gathering in Priority Setting Partnerships}, journal = {BMC Medical Research Methodology}, volume = {23}, number = {1}, pages = {-}, year = {2023} }
RIS	TY - JOUR AU - Mowforth OD AU - Burn L AU - Khan DZ AU - Yang X AU - Stacpoole SRL 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 P 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 A AU - Fehlings MG AU - Kotter MRN AU - Davies BM TI - Lived Experience-Centred Word Clouds May Improve Research Uncertainty Gathering in Priority Setting Partnerships JO - BMC Medical Research Methodology VL - 23 IS - 1 SP - EP - PY - 2023 ER -

Style

Citing Format

MLA

Mowforth OD, et al.. "Lived Experience-Centred Word Clouds May Improve Research Uncertainty Gathering in Priority Setting Partnerships." BMC Medical Research Methodology, vol. 23, no. 1, 2023, pp. -.

APA

Mowforth OD, Burn L, Khan DZ, Yang X, Stacpoole SRL, Gronlund T, Tetreault L, Kalsiryan S, Starkey ML, Sadler I, Sarewitz E, Houlton D, Carter J, Howard P, Rahimimovaghar V, Guest JD, Aarabi B, Kwon BK, Kurpad SN, ... Davies BM (2023). Lived Experience-Centred Word Clouds May Improve Research Uncertainty Gathering in Priority Setting Partnerships. BMC Medical Research Methodology, 23(1), -.

Chicago

Mowforth OD, Burn L, Khan DZ, Yang X, Stacpoole SRL, Gronlund T, Tetreault L, et al.. "Lived Experience-Centred Word Clouds May Improve Research Uncertainty Gathering in Priority Setting Partnerships." BMC Medical Research Methodology 23, no. 1 (2023): -.

Harvard

Mowforth OD et al. (2023) 'Lived Experience-Centred Word Clouds May Improve Research Uncertainty Gathering in Priority Setting Partnerships', BMC Medical Research Methodology, 23(1), pp. -.

Vancouver

Mowforth OD, Burn L, Khan DZ, Yang X, Stacpoole SRL, Gronlund T, et al.. Lived Experience-Centred Word Clouds May Improve Research Uncertainty Gathering in Priority Setting Partnerships. BMC Medical Research Methodology. 2023;23(1):-.

BibTex

@article{ author = {Mowforth OD and Burn L and Khan DZ and Yang X and Stacpoole SRL 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 P 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 A and Fehlings MG and Kotter MRN and Davies BM}, title = {Lived Experience-Centred Word Clouds May Improve Research Uncertainty Gathering in Priority Setting Partnerships}, journal = {BMC Medical Research Methodology}, volume = {23}, number = {1}, pages = {-}, year = {2023} }

RIS

TY - JOUR
AU - Mowforth OD
AU - Burn L
AU - Khan DZ
AU - Yang X
AU - Stacpoole SRL
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 P
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 A
AU - Fehlings MG
AU - Kotter MRN
AU - Davies BM
TI - Lived Experience-Centred Word Clouds May Improve Research Uncertainty Gathering in Priority Setting Partnerships
JO - BMC Medical Research Methodology
VL - 23
IS - 1
SP -
EP -
PY - 2023
ER -

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Abstract