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

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 incre...

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Hauptverfasser: Haroutounian, Simon (VerfasserIn) , Holzer, Katherine J. (VerfasserIn) , Kerns, Robert D. (VerfasserIn) , Veasley, Christin (VerfasserIn) , Dworkin, Robert H. (VerfasserIn) , Turk, Dennis C. (VerfasserIn) , Carman, Kristin L. (VerfasserIn) , Chambers, Christine T. (VerfasserIn) , Cowan, Penney (VerfasserIn) , Edwards, Robert R. (VerfasserIn) , Eisenach, James C. (VerfasserIn) , Farrar, John T. (VerfasserIn) , Ferguson, McKenzie (VerfasserIn) , Forsythe, Laura P. (VerfasserIn) , Freeman, Roy (VerfasserIn) , Gewandter, Jennifer S. (VerfasserIn) , Gilron, Ian (VerfasserIn) , Goertz, Christine (VerfasserIn) , Grol-Prokopczyk, Hanna (VerfasserIn) , Iyengar, Smriti (VerfasserIn) , Jordan, Isabel (VerfasserIn) , Kamp, Cornelia (VerfasserIn) , Kleykamp, Bethea A. (VerfasserIn) , Knowles, Rachel L. (VerfasserIn) , Langford, Dale J. (VerfasserIn) , Mackey, Sean (VerfasserIn) , Malamut, Richard (VerfasserIn) , Markman, John (VerfasserIn) , Martin, Kathryn R. (VerfasserIn) , McNicol, Ewan (VerfasserIn) , Patel, Kushang V. (VerfasserIn) , Rice, Andrew S. C. (VerfasserIn) , Rowbotham, Michael (VerfasserIn) , Sandbrink, Friedhelm (VerfasserIn) , Simon, Lee S. (VerfasserIn) , Steiner, Deborah J. (VerfasserIn) , Vollert, Jan (VerfasserIn)
Dokumenttyp: Article (Journal)
Sprache:Englisch
Veröffentlicht: May 2024
In: Pain
Year: 2024, Jahrgang: 165, Heft: 5, Pages: 1013-1028
ISSN:1872-6623
DOI:10.1097/j.pain.0000000000003121
Online-Zugang:Verlag, kostenfrei, Volltext: https://doi.org/10.1097/j.pain.0000000000003121
Verlag, kostenfrei, Volltext: https://journals.lww.com/pain/fulltext/2024/05000/patient_engagement_in_designing,_conducting,_and.9.aspx
Volltext
Verfasserangaben: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 Jordan, Cornelia Kamp, Bethea A. Kleykamp, Rachel L. Knowles, Dale J. Langford, Sean Mackey, Richard Malamut, John Markman, Kathryn R. Martin, Ewan McNicol, Kushang V. Patel, Andrew S. C. Rice, Michael Rowbotham, Friedhelm Sandbrink, Lee S. Simon, Deborah J. Steiner, Jan Vollert

MARC

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520 |a 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. 
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