Evidence map›Paper›PMID 37087419›Full record

Trial reportBMC medical research methodology2023

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 and 17 more

Open access · goldAbstract readRandomized Controlled Trial
PubMed Full text at PMC Publisher
In one paragraph

Trial report in BMC medical research methodology, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.

0numbers the graph read from it
0cells of the map it votes in
5citing papers in PubMed
1.7field-weighted citation impact, top 16% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

5 citing papers in PubMed, 6 citations in OpenAlex.

  1. Article
  2. Review
  3. Article
  4. Review
  5. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

27 authors at 16 institutions in 4 countries.

Oliver D MowforthDivision of Neurosurgery, Department of Clinical Neurosciences, University of Cambridge, Cambridge, UK.
Lance BurnDivision of Neurosurgery, Department of Clinical Neurosciences, University of Cambridge, Cambridge, UK.
Danyal Z KhanDivision of Neurosurgery, Department of Clinical Neurosciences, University of Cambridge, Cambridge, UK.
Xiaoyu YangDivision of Neurosurgery, Department of Clinical Neurosciences, University of Cambridge, Cambridge, UK.
Sybil R L StacpooleDepartment of Clinical Neurosciences, North West Anglia NHS Foundation Trust and Cambridge University Hospitals NHS Foundation Trust, Cambridge, UK.
Toto GronlundJames Lind Alliance, National Institute for Health Research, Southampton, UK.
Lindsay TetreaultDivision of Neurosurgery, University of Toronto, Toronto, ON, Canada.
Sukhvinder Kalsi-RyanToronto Rehabilitation Institute-LC, University Health Network, Toronto, ON, Canada.
Michelle L StarkeyDivision of Neurosurgery, Department of Clinical Neurosciences, University of Cambridge, Cambridge, UK.
Iwan SadlerMyelopathy.Org, (Registered Charity England and Wales, No 1178673), Cambridge, UK.
Ellen SarewitzThe Goffin Consultancy, Goffin Consultancy Ltd, Riding House, Stelling Minnis, Bossingham Road, Canterbury, CT4 6AZ, UK.
Delphine HoultonMyelopathy.Org, (Registered Charity England and Wales, No 1178673), Cambridge, UK.
Julia CarterMyelopathy.Org, (Registered Charity England and Wales, No 1178673), Cambridge, UK.
Paige HowardUS Person with DCM Representative - CSU, Bakersfield, CA, USA.
Vafa Rahimi-MovagharAcademic Department of Neurological Surgery, Sina Trauma and Surgery Research Center, Tehran University of Medical Sciences, Tehran, Iran.
James D GuestDepartment of Neurological Surgery, Miller School of Medicine, University of Miami, Miami, FL, USA.
Bizhan AarabiDivision of Neurosurgery, Shock Trauma, University of Maryland, Baltimore, MD, USA.
Brian K KwonDivision of Spine Surgery, Vancouver General Hospital, University of British Columbia, Vancouver, BC, Canada.
Shekar N KurpadDepartment of Neurosurgery, Medical College of Wisconsin, Milwaukee, WI, USA.
James HarropDivision of Neurosurgery, Thomas Jefferson University Hospital, Philadelphia, PA, USA.
Jefferson R WilsonDivision of Neurosurgery, University of Toronto, Toronto, ON, Canada.
Robert GrossmanDivision of Neurosurgery, Houston Methodist Hospital, Houston, TX, USA.
Emma K SmithSchool of General Practice, NHS Health Education East of England, London, UK.
Angus McNairCenter for Surgical Research, Bristol Medical School: Population Health Sciences, University of Bristol, Bristol, UK.
Michael G FehlingsDivision of Neurosurgery, University of Toronto, Toronto, ON, Canada.
Mark R N KotterDivision of Neurosurgery, Department of Clinical Neurosciences, University of Cambridge, Cambridge, UK.
Benjamin M DaviesDivision of Neurosurgery, Department of Clinical Neurosciences, University of Cambridge, Cambridge, UK. benjamin.davies4@nhs.net.
University of Cambridge · GBUniversity of Toronto · CACalifornia State University, Bakersfield · USCambridge University Hospitals NHS Foundation Trust · GBHealth Education England · GBMedical College of Wisconsin · USMethodist Hospital · USNational Institute for Health Research · GBTehran University of Medical Sciences · IRThomas Jefferson University Hospital · USToronto Rehabilitation Institute · CAUniversity of Bristol · GBUniversity of Maryland, Baltimore · USUniversity of Miami · USVancouver General Hospital · CAWellcome/MRC Cambridge Stem Cell Institute · GB

Funding

Department of Health CS-2015-15-023Department of Health NIHR-CS-2017-17-010Medical Research CouncilWellcome Trust
6 · The paper itself

Abstract

introductionAO 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.

methodsPatient-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.

resultsA 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.

conclusionsWord 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.

Indexed as

Biomedical ResearchHealth PrioritiesHealth PersonnelHumansSurveys and QuestionnairesUncertaintyAudit, SurveillanceCervicalCervical stenosisCommon data elementsConsensusDisc herniationMyelopathyOssification of posterior longitudinal ligamentOutcomeResearch prioritiesSpondylosisWord cloud

Identifiers

PMID37087419
PMCPMC10122197
OpenAlexW4366768311

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.