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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
Authors
  1. Mowforth OD1
  2. Burn L1
  3. Khan DZ1
  4. Yang X1
  5. Stacpoole SRL2
  6. Gronlund T3
  7. Tetreault L4
  8. Kalsiryan S5
  9. Starkey ML1
  10. Sadler I6
  11. Sarewitz E7
  12. Houlton D6
  13. Carter J6
  14. Howard P8
  15. Rahimimovaghar V9
  16. Guest JD10
  17. Aarabi B11
  18. Kwon BK12
  19. Kurpad SN13
  20. Harrop J14
  21. Wilson JR4
  22. Grossman R15
  23. Smith EK16
  24. Mcnair A17
  25. Fehlings MG4
  26. Kotter MRN1, 18
  27. Davies BM1
Show Affiliations
Authors Affiliations
  1. 1. Division of Neurosurgery, Department of Clinical Neurosciences, University of Cambridge, Cambridge, United Kingdom
  2. 2. Department of Clinical Neurosciences, North West Anglia NHS Foundation Trust and Cambridge University Hospitals NHS Foundation Trust, Cambridge, United Kingdom
  3. 3. James Lind Alliance, National Institute for Health Research, Southampton, United Kingdom
  4. 4. Division of Neurosurgery, University of Toronto, Toronto, ON, Canada
  5. 5. Toronto Rehabilitation Institute-LC, University Health Network, Toronto, ON, Canada
  6. 6. Myelopathy.Org, (Registered Charity England and Wales, No 1178673), Cambridge, United Kingdom
  7. 7. The Goffin Consultancy, Goffin Consultancy Ltd, Riding House, Stelling Minnis, Bossingham Road, Canterbury, CT4 6AZ, United Kingdom
  8. 8. US Person with DCM Representative – CSU, Bakersfield, CA, United States
  9. 9. Academic Department of Neurological Surgery, Sina Trauma and Surgery Research Center, Tehran University of Medical Sciences, Tehran, Iran
  10. 10. Department of Neurological Surgery, Miller School of Medicine, University of Miami, Miami, FL, United States
  11. 11. Division of Neurosurgery, Shock Trauma, University of Maryland, Baltimore, MD, United States
  12. 12. Division of Spine Surgery, Vancouver General Hospital, University of British Columbia, Vancouver, BC, Canada
  13. 13. Department of Neurosurgery, Medical College of Wisconsin, Milwaukee, WI, United States
  14. 14. Division of Neurosurgery, Thomas Jefferson University Hospital, Philadelphia, PA, United States
  15. 15. Division of Neurosurgery, Houston Methodist Hospital, Houston, TX, United States
  16. 16. School of General Practice, NHS Health Education East of England, London, United Kingdom
  17. 17. Center for Surgical Research, Bristol Medical School: Population Health Sciences, University of Bristol, Bristol, United Kingdom
  18. 18. Wellcome Trust & MRC Cambridge Stem Cell Institute, Cambridge, United Kingdom

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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