Lived experience-centred word clouds may improve research uncertainty gathering in priority setting partnerships
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 healt...
| Main Authors: | , , , , , , , , , , , , , , , , , , , , , , , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
BMC
2023-04-01
|
| Series: | BMC Medical Research Methodology |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s12874-023-01897-6 |
| _version_ | 1797840950182019072 |
|---|---|
| author | 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 Harrop Jefferson R. Wilson Robert Grossman Emma K. Smith Angus McNair Michael G. Fehlings Mark R. N. Kotter Benjamin M. Davies |
| author_facet | 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 Harrop Jefferson R. Wilson Robert Grossman Emma K. Smith Angus McNair Michael G. Fehlings Mark R. N. Kotter Benjamin M. Davies |
| author_sort | Oliver D. Mowforth |
| collection | DOAJ |
| description | 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. |
| first_indexed | 2024-04-09T16:23:06Z |
| format | Article |
| id | doaj.art-ac071f02f3f7458f828eb7306894cae5 |
| institution | Directory Open Access Journal |
| issn | 1471-2288 |
| language | English |
| last_indexed | 2024-04-09T16:23:06Z |
| publishDate | 2023-04-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Medical Research Methodology |
| spelling | doaj.art-ac071f02f3f7458f828eb7306894cae52023-04-23T11:21:09ZengBMCBMC Medical Research Methodology1471-22882023-04-0123111010.1186/s12874-023-01897-6Lived experience-centred word clouds may improve research uncertainty gathering in priority setting partnershipsOliver D. Mowforth0Lance Burn1Danyal Z. Khan2Xiaoyu Yang3Sybil R. L. Stacpoole4Toto Gronlund5Lindsay Tetreault6Sukhvinder Kalsi-Ryan7Michelle L. Starkey8Iwan Sadler9Ellen Sarewitz10Delphine Houlton11Julia Carter12Paige Howard13Vafa Rahimi-Movaghar14James D. Guest15Bizhan Aarabi16Brian K. Kwon17Shekar N. Kurpad18James Harrop19Jefferson R. Wilson20Robert Grossman21Emma K. Smith22Angus McNair23Michael G. Fehlings24Mark R. N. Kotter25Benjamin M. Davies26Division of Neurosurgery, Department of Clinical Neurosciences, University of CambridgeDivision of Neurosurgery, Department of Clinical Neurosciences, University of CambridgeDivision of Neurosurgery, Department of Clinical Neurosciences, University of CambridgeDivision of Neurosurgery, Department of Clinical Neurosciences, University of CambridgeDepartment of Clinical Neurosciences, North West Anglia NHS Foundation Trust and Cambridge University Hospitals NHS Foundation TrustJames Lind Alliance, National Institute for Health ResearchDivision of Neurosurgery, University of TorontoToronto Rehabilitation Institute-LC, University Health NetworkDivision of Neurosurgery, Department of Clinical Neurosciences, University of CambridgeMyelopathy.Org, (Registered Charity England and Wales, No 1178673)The Goffin Consultancy, Goffin Consultancy Ltd, Riding House, Stelling MinnisMyelopathy.Org, (Registered Charity England and Wales, No 1178673)Myelopathy.Org, (Registered Charity England and Wales, No 1178673)US Person with DCM Representative – CSUAcademic Department of Neurological Surgery, Sina Trauma and Surgery Research Center, Tehran University of Medical SciencesDepartment of Neurological Surgery, Miller School of Medicine, University of MiamiDivision of Neurosurgery, Shock Trauma, University of MarylandDivision of Spine Surgery, Vancouver General Hospital, University of British ColumbiaDepartment of Neurosurgery, Medical College of WisconsinDivision of Neurosurgery, Thomas Jefferson University HospitalDivision of Neurosurgery, University of TorontoDivision of Neurosurgery, Houston Methodist HospitalSchool of General Practice, NHS Health Education East of EnglandCenter for Surgical Research, Bristol Medical School: Population Health Sciences, University of BristolDivision of Neurosurgery, University of TorontoDivision of Neurosurgery, Department of Clinical Neurosciences, University of CambridgeDivision of Neurosurgery, Department of Clinical Neurosciences, University of CambridgeAbstract 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.https://doi.org/10.1186/s12874-023-01897-6CervicalMyelopathyWord cloudOssification of posterior longitudinal ligamentSpondylosisDisc herniation |
| spellingShingle | 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 Harrop Jefferson R. Wilson Robert Grossman Emma K. Smith Angus McNair Michael G. Fehlings Mark R. N. Kotter Benjamin M. Davies Lived experience-centred word clouds may improve research uncertainty gathering in priority setting partnerships BMC Medical Research Methodology Cervical Myelopathy Word cloud Ossification of posterior longitudinal ligament Spondylosis Disc herniation |
| title | Lived experience-centred word clouds may improve research uncertainty gathering in priority setting partnerships |
| title_full | Lived experience-centred word clouds may improve research uncertainty gathering in priority setting partnerships |
| title_fullStr | Lived experience-centred word clouds may improve research uncertainty gathering in priority setting partnerships |
| title_full_unstemmed | Lived experience-centred word clouds may improve research uncertainty gathering in priority setting partnerships |
| title_short | Lived experience-centred word clouds may improve research uncertainty gathering in priority setting partnerships |
| title_sort | lived experience centred word clouds may improve research uncertainty gathering in priority setting partnerships |
| topic | Cervical Myelopathy Word cloud Ossification of posterior longitudinal ligament Spondylosis Disc herniation |
| url | https://doi.org/10.1186/s12874-023-01897-6 |
| work_keys_str_mv | AT oliverdmowforth livedexperiencecentredwordcloudsmayimproveresearchuncertaintygatheringinprioritysettingpartnerships AT lanceburn livedexperiencecentredwordcloudsmayimproveresearchuncertaintygatheringinprioritysettingpartnerships AT danyalzkhan livedexperiencecentredwordcloudsmayimproveresearchuncertaintygatheringinprioritysettingpartnerships AT xiaoyuyang livedexperiencecentredwordcloudsmayimproveresearchuncertaintygatheringinprioritysettingpartnerships AT sybilrlstacpoole livedexperiencecentredwordcloudsmayimproveresearchuncertaintygatheringinprioritysettingpartnerships AT totogronlund livedexperiencecentredwordcloudsmayimproveresearchuncertaintygatheringinprioritysettingpartnerships AT lindsaytetreault livedexperiencecentredwordcloudsmayimproveresearchuncertaintygatheringinprioritysettingpartnerships AT sukhvinderkalsiryan livedexperiencecentredwordcloudsmayimproveresearchuncertaintygatheringinprioritysettingpartnerships AT michellelstarkey livedexperiencecentredwordcloudsmayimproveresearchuncertaintygatheringinprioritysettingpartnerships AT iwansadler livedexperiencecentredwordcloudsmayimproveresearchuncertaintygatheringinprioritysettingpartnerships AT ellensarewitz livedexperiencecentredwordcloudsmayimproveresearchuncertaintygatheringinprioritysettingpartnerships AT delphinehoulton livedexperiencecentredwordcloudsmayimproveresearchuncertaintygatheringinprioritysettingpartnerships AT juliacarter livedexperiencecentredwordcloudsmayimproveresearchuncertaintygatheringinprioritysettingpartnerships AT paigehoward livedexperiencecentredwordcloudsmayimproveresearchuncertaintygatheringinprioritysettingpartnerships AT vafarahimimovaghar livedexperiencecentredwordcloudsmayimproveresearchuncertaintygatheringinprioritysettingpartnerships AT jamesdguest livedexperiencecentredwordcloudsmayimproveresearchuncertaintygatheringinprioritysettingpartnerships AT bizhanaarabi livedexperiencecentredwordcloudsmayimproveresearchuncertaintygatheringinprioritysettingpartnerships AT briankkwon livedexperiencecentredwordcloudsmayimproveresearchuncertaintygatheringinprioritysettingpartnerships AT shekarnkurpad livedexperiencecentredwordcloudsmayimproveresearchuncertaintygatheringinprioritysettingpartnerships AT jamesharrop livedexperiencecentredwordcloudsmayimproveresearchuncertaintygatheringinprioritysettingpartnerships AT jeffersonrwilson livedexperiencecentredwordcloudsmayimproveresearchuncertaintygatheringinprioritysettingpartnerships AT robertgrossman livedexperiencecentredwordcloudsmayimproveresearchuncertaintygatheringinprioritysettingpartnerships AT emmaksmith livedexperiencecentredwordcloudsmayimproveresearchuncertaintygatheringinprioritysettingpartnerships AT angusmcnair livedexperiencecentredwordcloudsmayimproveresearchuncertaintygatheringinprioritysettingpartnerships AT michaelgfehlings livedexperiencecentredwordcloudsmayimproveresearchuncertaintygatheringinprioritysettingpartnerships AT markrnkotter livedexperiencecentredwordcloudsmayimproveresearchuncertaintygatheringinprioritysettingpartnerships AT benjaminmdavies livedexperiencecentredwordcloudsmayimproveresearchuncertaintygatheringinprioritysettingpartnerships |