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Patient engagement in designing, conducting, and disseminating clinical pain research: IMMPACT recommended considerations

2023· article· en· W4390710254 on OpenAlexafffund
Simon Haroutounian, Katherine J. Holzer, Robert D. Kerns, Christin Veasley, Robert H. Dworkin, Dennis C. Turk, Kristin L. Carman, Christine T. Chambers, Penney Cowan, Robert R. Edwards, James C. Eisenach, John T. Farrar, McKenzie Ferguson, Laura P. Forsythe, Roy Freeman, Jennifer S. Gewandter, Ian Gilron, Christine Goertz, Hanna Grol-Prokopczyk, Smriti Iyengar, Isabel Jordán, Cornelia Kamp, Bethea A. Kleykamp, Rachel L Knowles, Dale J. Langford, Sean Mackey, Richard Malamut, John D. Markman, Kathryn R. Martin, Ewan D McNicol, Kushang V. Patel, Andrew S.C. Rice, Michael C. Rowbotham, Friedhelm Sandbrink, Lee S. Simon, Deborah J. Steiner, Jan Vollert

Bibliographic record

VenuePain · 2023
Typearticle
Languageen
FieldHealth Professions
TopicMental Health and Patient Involvement
Canadian institutionsQueen's UniversityIzaak Walton Killam Health CentreDalhousie University
FundersHealth CanadaNational Institutes of HealthGeorge Washington UniversityVanderbilt UniversityJohns Hopkins UniversityPfizerUniversity of AberdeenCanadian Institutes of Health ResearchUniversity of WashingtonEli Lilly and CompanyNational Institute of Neurological Disorders and StrokeNational Institute for Health and Care ResearchU.S. Department of Veterans Affairs
KeywordsClinical researchClinical trialGovernment (linguistics)DisseminationPublic relationsMedicineValue (mathematics)Outcomes researchAlternative medicinePatient advocacyPatient recruitmentPsychologyMedical educationMEDLINEPolitical science

Abstract

fetched live from OpenAlex

ABSTRACT: In the traditional clinical research model, patients are typically involved only as participants. However, there has been a shift in recent years highlighting the value and contributions that patients bring as members of the research team, across the clinical research lifecycle. It is becoming increasingly evident that to develop research that is both meaningful to people who have the targeted condition and is feasible, there are important benefits of involving patients in the planning, conduct, and dissemination of research from its earliest stages. In fact, research funders and regulatory agencies are now explicitly encouraging, and sometimes requiring, that patients are engaged as partners in research. Although this approach has become commonplace in some fields of clinical research, it remains the exception in clinical pain research. As such, the Initiative on Methods, Measurement, and Pain Assessment in Clinical Trials convened a meeting with patient partners and international representatives from academia, patient advocacy groups, government regulatory agencies, research funding organizations, academic journals, and the biopharmaceutical industry to develop consensus recommendations for advancing patient engagement in all stages of clinical pain research in an effective and purposeful manner. This article summarizes the results of this meeting and offers considerations for meaningful and authentic engagement of patient partners in clinical pain research, including recommendations for representation, timing, continuous engagement, measurement, reporting, and research dissemination.

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 distilled prediction

Teacher imitation

Not calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.

metaresearch head score (Codex)0.134
metaresearch head score (Gemma)0.016
Version: codex-gemma-dda1882f352aValidation status: machine_predicted_unvalidated
Candidate categoriesMetaresearch, Science and technology studies
Consensus categoriesMetaresearch
DomainCandidate signal: none · Consensus signal: none
Study designCandidate signal: Observational · Consensus signal: none
GenreCandidate signal: Empirical · Consensus signal: Empirical
Teacher disagreement score0.632
Threshold uncertainty score1.000

Codex and Gemma teacher scores by category

CategoryCodexGemma
Metaresearch0.1340.016
Meta-epidemiology (narrow)0.0000.000
Meta-epidemiology (broad)0.0000.000
Bibliometrics0.0000.000
Science and technology studies0.0020.000
Scholarly communication0.0000.000
Open science0.0000.000
Research integrity0.0000.001
Insufficient payload (model declined to judge)0.0010.000

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 head0.834
GPT teacher head0.615
Teacher spread0.219 · 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; both teacher heads agree on what is shown here.

Study designObservational
Domainnot available
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

Citations28
Published2023
Admission routes2
Has abstractyes

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