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Pragmatic Considerations in Incorporating Stakeholder Engagement Into a Palliative Care Transitions Study
Stakeholder involvement in health care research has been shown to improve research development, processes, and dissemination. The literature is developing on stakeholder engagement methods and preliminarily validated tools for evaluating stakeholder level of engagement have been proposed for specifi...
Autores principales: | , , , , , , , , , , , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Lippincott Williams & Wilkins
2021
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8263137/ https://www.ncbi.nlm.nih.gov/pubmed/34228019 http://dx.doi.org/10.1097/MLR.0000000000001583 |
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author | de Forcrand, Claire Flannery, Mara Cho, Jeanne Reddy Pidatala, Neha Batra, Romilla Booker-Vaughns, Juanita Chan, Garrett K. Dunn, Patrick Galvin, Robert Hopkins, Ernest Isaacs, Eric D. Kizzie-Gillett, Constance L. Maguire, Margaret Navarro, Martha Rosini, Dawn Vaughan, William Welsh, Sally Williams, Pluscedia Young-Brinn, Angela Grudzen, Corita R. |
author_facet | de Forcrand, Claire Flannery, Mara Cho, Jeanne Reddy Pidatala, Neha Batra, Romilla Booker-Vaughns, Juanita Chan, Garrett K. Dunn, Patrick Galvin, Robert Hopkins, Ernest Isaacs, Eric D. Kizzie-Gillett, Constance L. Maguire, Margaret Navarro, Martha Rosini, Dawn Vaughan, William Welsh, Sally Williams, Pluscedia Young-Brinn, Angela Grudzen, Corita R. |
author_sort | de Forcrand, Claire |
collection | PubMed |
description | Stakeholder involvement in health care research has been shown to improve research development, processes, and dissemination. The literature is developing on stakeholder engagement methods and preliminarily validated tools for evaluating stakeholder level of engagement have been proposed for specific stakeholder groups and settings. OBJECTIVES: This paper describes the methodology for engaging a Study Advisory Committee (SAC) in research and reports on the use of a stakeholder engagement survey for measuring level of engagement. METHODS: Stakeholders with previous research connections were recruited to the SAC during the planning process for a multicenter randomized control clinical trial, which is ongoing at the time of this writing. All SAC meetings undergo qualitative analysis, while the Stakeholder Engagement Survey instrument developed by the Patient-Centered Outcomes Research Institute (PCORI) is distributed annually for quantitative evaluation. RESULTS: The trial’s SAC is composed of 18 members from 3 stakeholder groups: patients and their caregivers; patient advocacy organizations; and health care payers. After an initial in-person meeting, the SAC meets quarterly by telephone and annually in-person. The SAC monitors research progress and provides feedback on all study processes. The stakeholder engagement survey reveals improved engagement over time as well as continued challenges. CONCLUSIONS: Stakeholder engagement in the research process has meaningfully contributed to the study design, patient recruitment, and preliminary analysis of findings. |
format | Online Article Text |
id | pubmed-8263137 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2021 |
publisher | Lippincott Williams & Wilkins |
record_format | MEDLINE/PubMed |
spelling | pubmed-82631372021-07-08 Pragmatic Considerations in Incorporating Stakeholder Engagement Into a Palliative Care Transitions Study de Forcrand, Claire Flannery, Mara Cho, Jeanne Reddy Pidatala, Neha Batra, Romilla Booker-Vaughns, Juanita Chan, Garrett K. Dunn, Patrick Galvin, Robert Hopkins, Ernest Isaacs, Eric D. Kizzie-Gillett, Constance L. Maguire, Margaret Navarro, Martha Rosini, Dawn Vaughan, William Welsh, Sally Williams, Pluscedia Young-Brinn, Angela Grudzen, Corita R. Med Care Original Articles Stakeholder involvement in health care research has been shown to improve research development, processes, and dissemination. The literature is developing on stakeholder engagement methods and preliminarily validated tools for evaluating stakeholder level of engagement have been proposed for specific stakeholder groups and settings. OBJECTIVES: This paper describes the methodology for engaging a Study Advisory Committee (SAC) in research and reports on the use of a stakeholder engagement survey for measuring level of engagement. METHODS: Stakeholders with previous research connections were recruited to the SAC during the planning process for a multicenter randomized control clinical trial, which is ongoing at the time of this writing. All SAC meetings undergo qualitative analysis, while the Stakeholder Engagement Survey instrument developed by the Patient-Centered Outcomes Research Institute (PCORI) is distributed annually for quantitative evaluation. RESULTS: The trial’s SAC is composed of 18 members from 3 stakeholder groups: patients and their caregivers; patient advocacy organizations; and health care payers. After an initial in-person meeting, the SAC meets quarterly by telephone and annually in-person. The SAC monitors research progress and provides feedback on all study processes. The stakeholder engagement survey reveals improved engagement over time as well as continued challenges. CONCLUSIONS: Stakeholder engagement in the research process has meaningfully contributed to the study design, patient recruitment, and preliminary analysis of findings. Lippincott Williams & Wilkins 2021-08 2021-07-08 /pmc/articles/PMC8263137/ /pubmed/34228019 http://dx.doi.org/10.1097/MLR.0000000000001583 Text en Copyright © 2021 The Author(s). Published by Wolters Kluwer Health, Inc. https://creativecommons.org/licenses/by-nc-nd/4.0/This is an open access article distributed under the terms of the Creative Commons Attribution-Non Commercial-No Derivatives License 4.0 (https://creativecommons.org/licenses/by-nc-nd/4.0/) (CCBY-NC-ND), where it is permissible to download and share the work provided it is properly cited. The work cannot be changed in any way or used commercially without permission from the journal. http://creativecommons.org/licenses/by-nc-nd/4.0/ (https://creativecommons.org/licenses/by-nc-nd/4.0/) |
spellingShingle | Original Articles de Forcrand, Claire Flannery, Mara Cho, Jeanne Reddy Pidatala, Neha Batra, Romilla Booker-Vaughns, Juanita Chan, Garrett K. Dunn, Patrick Galvin, Robert Hopkins, Ernest Isaacs, Eric D. Kizzie-Gillett, Constance L. Maguire, Margaret Navarro, Martha Rosini, Dawn Vaughan, William Welsh, Sally Williams, Pluscedia Young-Brinn, Angela Grudzen, Corita R. Pragmatic Considerations in Incorporating Stakeholder Engagement Into a Palliative Care Transitions Study |
title | Pragmatic Considerations in Incorporating Stakeholder Engagement Into a Palliative Care Transitions Study |
title_full | Pragmatic Considerations in Incorporating Stakeholder Engagement Into a Palliative Care Transitions Study |
title_fullStr | Pragmatic Considerations in Incorporating Stakeholder Engagement Into a Palliative Care Transitions Study |
title_full_unstemmed | Pragmatic Considerations in Incorporating Stakeholder Engagement Into a Palliative Care Transitions Study |
title_short | Pragmatic Considerations in Incorporating Stakeholder Engagement Into a Palliative Care Transitions Study |
title_sort | pragmatic considerations in incorporating stakeholder engagement into a palliative care transitions study |
topic | Original Articles |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8263137/ https://www.ncbi.nlm.nih.gov/pubmed/34228019 http://dx.doi.org/10.1097/MLR.0000000000001583 |
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