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

Oliver D. Mowforth, Lance Burn, Danyal Z. Khan, Xiaoyu Yang, Sybil R.L. Stacpoole, Toto Gronlund, Lindsay Tetreault, Sukhvinder Kalsi-Ryan, Michelle L. Starkey, Iwan Sadler, Ellen Sarewitz, Delphine Houlton, Julia Carter, Paige Howard, Vafa Rahimi-Movaghar, James D. Guest, Bizhan Aarabi, Brian K. Kwon, Shekar N. Kurpad, James HarropJefferson R. Wilson, Robert Grossman, Emma K. Smith, Angus McNair, Michael G. Fehlings, Mark R.N. Kotter, Benjamin M. Davies*

*Corresponding author for this work

Research output: Contribution to journalArticle (Academic Journal)peer-review

1 Citation (Scopus)


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.

Original languageEnglish
Article number100
JournalBMC Medical Research Methodology
Issue number1
Publication statusPublished - Dec 2023

Bibliographical note

Funding Information:
The process of establishing research priorities is supported by organisations such as the National Institute for Health Research (NIHR) James Lind Alliance (JLA) []. The JLA define research uncertainties as (1) areas with no up-to-date, reliable systematic reviews of research evidence addressing the uncertainty, or (2) up-to-date systemic reviews of research evidence showing that uncertainties exist []. JLA methodology starts with an information gathering process, by seeking research suggestions from patients, family, caregivers, and healthcare professionals. Commonly this is conducted using web-based surveys, with survey design tailored to the specific condition under consideration. For AO Spine RECODE-DCM, survey sub-sections included diagnosis, treatment, long-term management, and other issues []. The process is designed to build consensus and encompasses several rounds of surveys. After each round participants are presented with an anonymised summary of all responses and can amend their individual responses [].

Funding Information:
The authors acknowledge the support of the AO Spine RECODE-DCM community and in the completion of this work. The views expressed in this publication are those of the authors and not necessarily those of the NHS, the National Institute for Health Research or the Department of Health. AO Spine RECODE-DCM and its investigators would like to acknowledge the funding and support of AO Spine, without whom this initiative would not be possible.

Funding Information:
ODM is supported by an Academic Clinical Fellowship at the University of Cambridge. 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 MRNK’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 an NIHR Clinical Doctoral Fellowship.

Publisher Copyright:
© 2023, The Author(s).


  • Audit, Surveillance
  • Cervical
  • Cervical stenosis
  • Common data elements
  • Consensus
  • Disc herniation
  • Myelopathy
  • Ossification of posterior longitudinal ligament
  • Outcome
  • Research priorities
  • Spondylosis
  • Word cloud


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