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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
Authors
  1. Davies BM1
  2. Mowforth OD1
  3. Khan DZ1
  4. Yang X1
  5. Stacpoole SRL2
  6. Hazenbiller O3
  7. Gronlund T4
  8. Tetreault L5
  9. Kalsiryan S6
  10. Starkey ML1
  11. Sadler I7
  12. Sarewitz E8
  13. Houlton D7
  14. Carter J7
  15. Howard E9
  16. Rahimimovaghar V10
  17. Guest JD11
  18. Aarabi B12
  19. Kwon BK13
  20. Kurpad SN14
  21. Harrop J15
  22. Wilson JR16
  23. Grossman R17
  24. Smith EK18
  25. Mcnair AGK19
  26. Fehlings MG5
  27. Kotter MRN1, 20
Show Affiliations
Authors Affiliations
  1. 1. Academic Neurosurgery Unit & Anne McLaren Laboratory of Regenerative Medicine, Department of Clinical Neurosurgery, University of Cambridge, Cambridge, United Kingdom
  2. 2. Department of Clinical Neuroscience, Peterborough Hospital, North West Anglia NHS Foundation Trust and Cambridge University Hospitals NHS Foundation Trust, Addenbrooke’s Hospital, Cambridge, United Kingdom
  3. 3. AOSpine Spinal Cord Injury Knowledge Forum, Davos, Switzerland
  4. 4. James Lind Alliance, National Institute for Health Research, Southampton, United Kingdom
  5. 5. Division of Neurosurgery, Toronto Western Hospital, University Health Network, University of Toronto, Toronto, ON, Canada
  6. 6. Toronto Rehabilitation Institute-LC, University Health Network, Toronto, ON, Canada
  7. 7. Myelopathy.org (Registered Charity England and Wales, No 1178673), Cambridge, United Kingdom
  8. 8. The Goffin Consultancy, Goffin Consultancy Ltd, Riding House, Bossingham Road, Stelling Minnis, Canterbury, CT4 6AZ, United Kingdom
  9. 9. US Person with DCM Representative – CSU, Bakersfield, CA, United States
  10. 10. Academic Department of Neurological Surgery, Sina Trauma and Surgery Research Center, Tehran University of Medical Sciences, Tehran, Iran
  11. 11. Department of Neurological Surgery, Miller School of Medicine, University of Miami, Miami, FL, United States
  12. 12. Division of Neurosurgery, Shock Trauma, University of Maryland, Baltimore, MD, United States
  13. 13. Division of Spine Surgery, Vancouver General Hospital, University of British Columbia, Vancouver, BC, Canada
  14. 14. Department of Neurosurgery, Medical College of Wisconsin, Milwaukee, WI, United States
  15. 15. Division of Neurosurgery, Thomas Jefferson University Hospital, Philadelphia, PA, United States
  16. 16. Division of Neurosurgery, Department of Surgery, University of Toronto, Toronto, ON, Canada
  17. 17. Division of Neurosurgery, Houston Methodist Hospital, Houston, TX, United States
  18. 18. School of General Practice, NHS Health Education East of England, Cambridge, United Kingdom
  19. 19. Center for Surgical Research, Bristol Medical School: Population Health Sciences, University of Bristol, Bristol, United Kingdom
  20. 20. Wellcome Trust & MRC Cambridge Stem Cell Institute, Cambridge, United Kingdom

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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