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 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.

Degenerative Cervical Myelopathy: Towards a Personalized Approach

“…The necessity of better understanding the uncertainties and needs of patients with a lived experience of DCM has been investigated in a recent online poll. 107 This multi-stakeholder consensus process, termed AO Spine Research objectives and Common Data Elements for Degenerative Cervical Myelopathy (RECODE-DCM), aims to promote research efficiency in DCM through generation and ranking of research questions. An essential component to this process was found to be the inclusion of people with cervical myelopathy.…”

Lived experience-centred word clouds may improve research uncertainty gathering in priority setting partnerships

“…A detailed description of the methodology used to design and create the AO Spine RECODE-DCM word clouds has been published [ 35 ].…”

“…The aim of this was to include the perspective of another under-represented stake-holder group [ 42 ] ensuring the process remained patient-centred by presenting suggestions back to the Myelopathy Support group for a further round of voting. Full details on the process of creating the word clouds have been published elsewhere [ 35 ].…”

“…The methodology for the generation of the word clouds used in the AO Spine RECODE-DCM PSP has been described in detail elsewhere [ 35 ]. Here we evaluate their impact on the responses in the PSP process.…”

Targeting patient recovery priorities in degenerative cervical myelopathy: design and rationale for the RECEDE-Myelopathy trial—study protocol

“…The involvement of public and patients representatives in research is recognised to be of key importance to ensure it delivers meaningful, practice-changing information. [47][48][49][50] As with many fields, this has been a problem for DCM. [51][52][53] To address this issue, we founded Myelopathy.…”