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
Benjamin M. Davies,
Oliver D. Mowforth,
Danyal Z. Khan,
Xiaoyu Yang,
Sybil R. L. Stacpoole,
Olesja Hazenbiller,
Toto Gronlund,
Lindsay Tetreault,
Sukhvinder Kalsi-Ryan,
Michelle L. Starkey,
Iwan Sadler,
Ellen Sarewitz,
Delphine Houlton,
Julia Carter,
Evangeline Howard,
Vafa Rahimi-Movaghar,
James D. Guest,
Bizhan Aarabi,
Brian K. Kwon,
Shekar N. Kurpad,
James Harrop,
Jefferson R. Wilson,
Robert Grossman,
Emma K. Smith,
Angus G.K. McNair,
Michael G. Fehlings,
Mark R. N. Kotter
Affiliations
Benjamin M. Davies
Academic Neurosurgery Unit & Anne McLaren Laboratory of Regenerative Medicine, Department of Clinical Neurosurgery, University of Cambridge
Oliver D. Mowforth
Academic Neurosurgery Unit & Anne McLaren Laboratory of Regenerative Medicine, Department of Clinical Neurosurgery, University of Cambridge
Danyal Z. Khan
Academic Neurosurgery Unit & Anne McLaren Laboratory of Regenerative Medicine, Department of Clinical Neurosurgery, University of Cambridge
Xiaoyu Yang
Academic Neurosurgery Unit & Anne McLaren Laboratory of Regenerative Medicine, Department of Clinical Neurosurgery, University of Cambridge
Sybil R. L. Stacpoole
Department of Clinical Neuroscience, Peterborough Hospital, North West Anglia NHS Foundation Trust and Cambridge University Hospitals NHS Foundation Trust, Addenbrooke’s Hospital
Olesja Hazenbiller
AOSpine Spinal Cord Injury Knowledge Forum
Toto Gronlund
James Lind Alliance, National Institute for Health Research
Lindsay Tetreault
Division of Neurosurgery, Toronto Western Hospital, University Health Network, University of Toronto
Sukhvinder Kalsi-Ryan
Toronto Rehabilitation Institute-LC, University Health Network
Michelle L. Starkey
Academic Neurosurgery Unit & Anne McLaren Laboratory of Regenerative Medicine, Department of Clinical Neurosurgery, University of Cambridge
Iwan Sadler
Myelopathy.org (Registered Charity England and Wales, No 1178673)
Ellen Sarewitz
The Goffin Consultancy, Goffin Consultancy Ltd
Delphine Houlton
Myelopathy.org (Registered Charity England and Wales, No 1178673)
Julia Carter
Myelopathy.org (Registered Charity England and Wales, No 1178673)
Evangeline Howard
US Person with DCM Representative – CSU
Vafa Rahimi-Movaghar
Academic Department of Neurological Surgery, Sina Trauma and Surgery Research Center, Tehran University of Medical Sciences
James D. Guest
Department of Neurological Surgery, Miller School of Medicine, University of Miami
Bizhan Aarabi
Division of Neurosurgery, Shock Trauma, University of Maryland
Brian K. Kwon
Division of Spine Surgery, Vancouver General Hospital, University of British Columbia
Shekar N. Kurpad
Department of Neurosurgery, Medical College of Wisconsin
James Harrop
Division of Neurosurgery, Thomas Jefferson University Hospital
Jefferson R. Wilson
Division of Neurosurgery, Department of Surgery, University of Toronto
Robert Grossman
Division of Neurosurgery, Houston Methodist Hospital
Emma K. Smith
School of General Practice, NHS Health Education East of England
Angus G.K. McNair
Center for Surgical Research, Bristol Medical School: Population Health Sciences, University of Bristol
Michael G. Fehlings
Division of Neurosurgery, Toronto Western Hospital, University Health Network, University of Toronto
Mark R. N. Kotter
Academic Neurosurgery Unit & Anne McLaren Laboratory of Regenerative Medicine, Department of Clinical Neurosurgery, University of Cambridge
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.
