@article{a8adaaa48091405a9658bc9e74ffaef4,
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",
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.",
keywords = "Audit, Cervical, Cervical stenosis, Common data elements (CDE), Consensus, Core outcomes in effectiveness trials (COMET), Dataset, Delphi, Disc herniation, James Lind Alliance (JLA), Myelopathy, OPLL, Outcome, Protocol, Research priorities, Spondylosis, Surveillance, Word cloud",
author = "Davies, {Benjamin M.} and Mowforth, {Oliver D.} and Khan, {Danyal Z.} and Xiaoyu Yang and Stacpoole, {Sybil R.L.} and Olesja Hazenbiller and Toto Gronlund and Lindsay Tetreault and Sukhvinder Kalsi-Ryan and Starkey, {Michelle L.} and Iwan Sadler and Ellen Sarewitz and Delphine Houlton and Julia Carter and Evangeline Howard and Vafa Rahimi-Movaghar and Guest, {James D.} and Bizhan Aarabi and Kwon, {Brian K.} and Kurpad, {Shekar N.} and James Harrop and Wilson, {Jefferson R.} and Robert Grossman and Smith, {Emma K.} and McNair, {Angus G.K.} and Fehlings, {Michael G.} and Kotter, {Mark R.N.}",
note = "Funding Information: AO Spine RECODE-DCM and its investigators would like to acknowledge the funding and support of AOSpine, without whom this initiative would not be possible. The research priorities were organized and funded by AO Spine through the AO Spine Knowledge Forum Spinal Cord Injury, a focused group of international Spinal Cord Injury experts. AO Spine is a clinical division of the AO Foundation, which is an independent medically guided not-for-profit organization. Study support was provided directly through the AO Spine Research Department. Funding Information: AO Spine RECODE-DCM and its investigators would like to acknowledge the funding and support of AOSpine, without whom this initiative would not be possible. The research priorities were organized and funded by AO Spine through the AO Spine Knowledge Forum Spinal Cord Injury, a focused group of international Spinal Cord Injury experts. AO Spine is a clinical division of the AO Foundation, which is an independent medically guided not-for-profit organization. Study support was provided directly through the AO Spine Research Department. Funding Information: AM is funded by a Clinician Scientist Fellowship (NIHR-CS-2017-17-010) from the UK National Institute for Health Research (NIHR) and supported by the NIHR Biomedical Research Centre at the University Hospitals Bristol NHS Foundation Trust and the University of Bristol. Research in the senior author{\textquoteright}s laboratory is supported by a core support grant from the Wellcome Trust and MRC to the Wellcome Trust-Medical Research Council Cambridge Stem Cell Institute. MRNK is supported by a NIHR Clinician Scientist Award, CS-2015-15-023. BMD is supported by a research fellowship from the Royal College of Surgeons (London). Publisher Copyright: {\textcopyright} 2021, The Author(s).",
year = "2021",
month = dec,
doi = "10.1186/s13063-021-05349-8",
language = "English (US)",
volume = "22",
journal = "Trials",
issn = "1745-6215",
publisher = "BioMed Central",
number = "1",
}