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Record W4400369150 · doi:10.3389/frdem.2024.1421737

Engaging people with lived experience of dementia in research meetings and events: insights from multiple perspectives

2024· article· en· W4400369150 on OpenAlexafffundabout
Ellen Snowball, Christine Aiken, Myrna Norman, Wayne Hykaway, Zoe Dempster, Inbal Itzhak, Emily McLellan, Katherine S. McGilton, Jennifer Bethell

Bibliographic record

VenueFrontiers in Dementia · 2024
Typearticle
Languageen
FieldHealth Professions
TopicMental Health and Patient Involvement
Canadian institutionsPublic Health OntarioUniversity of TorontoToronto Rehabilitation InstituteUniversity Health Network
FundersCanadian Institutes of Health ResearchAlzheimer SocietyConsortium canadien en neurodégénérescence associée au vieillissement
KeywordsLived experiencePerspective (graphical)DementiaPsychologySociologyMedicineComputer sciencePsychotherapist

Abstract

fetched live from OpenAlex

This perspective article describes the experiences of engaging people with lived experience of dementia in research meetings and events from the perspectives of people with lived experience, researchers, trainees, audience members and others. We outline examples of engagement from different events and describe a video project, initiated by people with lived experience, conveying diverse views about becoming integral collaborators in the Canadian Consortium on Neurodegeneration in Aging (CCNA) annual Partners Forum and Science Days. We also report evaluation data from audiences and present a series of tips and strategies for facilitating this engagement, including practical considerations for supporting people with lived experience.

Fetched live from OpenAlex and de-inverted. Abstracts are not stored in this database: the inverted indexes are 8.6 GB of the frame’s 9.3 GB of text, and the host has 13 GB free.

How this classification was reachedexpand

Full frame machine prediction

Teacher imitation

Not calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.

metaresearch head score (Codex)0.023
metaresearch head score (Gemma)0.032
Version: metacan-v3-hybrid-931329e0061cValidation status: machine_predicted_unvalidated
Candidate categoriesMetaresearch
Consensus categoriesnone
DomainCandidate signal: Methods · Consensus signal: none
Study designCandidate signal: Qualitative · Consensus signal: Qualitative
GenreCandidate signal: Empirical · Consensus signal: Empirical
Teacher disagreement score0.977
Threshold uncertainty score0.123

Distilled classifier scores by category (both heads)

CategoryCodexGemma
Metaresearch0.0230.032
Meta-epidemiology (narrow)0.0010.001
Meta-epidemiology (broad)0.0010.001
Bibliometrics0.0030.002
Science and technology studies0.0220.021
Scholarly communication0.0130.010
Open science0.0020.030
Research integrity0.0040.008
Insufficient payload (model declined to judge)0.0040.001

Machine scores (provisional)

The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.

Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.

Opus teacher head0.183
GPT teacher head0.437
Teacher spread0.254 · how far apart the two teachers sit on this one work
Validation statusscore_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from it

Classification

machine, unvalidated

Machine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.

Study designQualitative
DomainMethods
GenreEmpirical

How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".

Quick stats

Citations8
Published2024
Admission routes3
Has abstractyes

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