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Evaluating the “return on patient engagement initiatives” in medicines research and development: A literature review

BACKGROUND: Showing how engagement adds value for all stakeholders can be an effective motivator for broader implementation of patient engagement. However, it is unclear what methods can best be used to evaluate patient engagement. This paper is focused on ways to evaluate patient engagement at thre...

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Autores principales: Vat, Lidewij Eva, Finlay, Teresa, Jan Schuitmaker‐Warnaar, Tjerk, Fahy, Nick, Robinson, Paul, Boudes, Mathieu, Diaz, Ana, Ferrer, Elisa, Hivert, Virginie, Purman, Gabor, Kürzinger, Marie‐Laure, Kroes, Robert A., Hey, Claudia, Broerse, Jacqueline E.W.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: John Wiley and Sons Inc. 2019
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6978865/
https://www.ncbi.nlm.nih.gov/pubmed/31489988
http://dx.doi.org/10.1111/hex.12951
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author Vat, Lidewij Eva
Finlay, Teresa
Jan Schuitmaker‐Warnaar, Tjerk
Fahy, Nick
Robinson, Paul
Boudes, Mathieu
Diaz, Ana
Ferrer, Elisa
Hivert, Virginie
Purman, Gabor
Kürzinger, Marie‐Laure
Kroes, Robert A.
Hey, Claudia
Broerse, Jacqueline E.W.
author_facet Vat, Lidewij Eva
Finlay, Teresa
Jan Schuitmaker‐Warnaar, Tjerk
Fahy, Nick
Robinson, Paul
Boudes, Mathieu
Diaz, Ana
Ferrer, Elisa
Hivert, Virginie
Purman, Gabor
Kürzinger, Marie‐Laure
Kroes, Robert A.
Hey, Claudia
Broerse, Jacqueline E.W.
author_sort Vat, Lidewij Eva
collection PubMed
description BACKGROUND: Showing how engagement adds value for all stakeholders can be an effective motivator for broader implementation of patient engagement. However, it is unclear what methods can best be used to evaluate patient engagement. This paper is focused on ways to evaluate patient engagement at three decision‐making points in the medicines research and development process: research priority setting, clinical trial design and early dialogues with regulators and health technology assessment bodies. OBJECTIVE: Our aim was to review the literature on monitoring and evaluation of patient engagement, with a focus on indicators and methods. SEARCH STRATEGY AND INCLUSION CRITERIA: We undertook a scoping literature review using a systematic search, including academic and grey literature with a focus on evaluation approaches or outcomes associated with patient engagement. No date limits were applied other than a cut‐off of publications after July 2018. DATA EXTRACTION AND SYNTHESIS: Data were extracted from 91 publications, coded and thematically analysed. MAIN RESULTS: A total of 18 benefits and 5 costs of patient engagement were identified, mapped with 28 possible indicators for their evaluation. Several quantitative and qualitative methods were found for the evaluation of benefits and costs of patient engagement. DISCUSSION AND CONCLUSIONS: Currently available indicators and methods are of some use in measuring impact but are not sufficient to understand the pathway to impact, nor whether interaction between researchers and patients leads to change. We suggest that the impacts of patient engagement can best be determined not by applying single indicators, but a coherent set of measures.
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spelling pubmed-69788652020-02-01 Evaluating the “return on patient engagement initiatives” in medicines research and development: A literature review Vat, Lidewij Eva Finlay, Teresa Jan Schuitmaker‐Warnaar, Tjerk Fahy, Nick Robinson, Paul Boudes, Mathieu Diaz, Ana Ferrer, Elisa Hivert, Virginie Purman, Gabor Kürzinger, Marie‐Laure Kroes, Robert A. Hey, Claudia Broerse, Jacqueline E.W. Health Expect Review Articles BACKGROUND: Showing how engagement adds value for all stakeholders can be an effective motivator for broader implementation of patient engagement. However, it is unclear what methods can best be used to evaluate patient engagement. This paper is focused on ways to evaluate patient engagement at three decision‐making points in the medicines research and development process: research priority setting, clinical trial design and early dialogues with regulators and health technology assessment bodies. OBJECTIVE: Our aim was to review the literature on monitoring and evaluation of patient engagement, with a focus on indicators and methods. SEARCH STRATEGY AND INCLUSION CRITERIA: We undertook a scoping literature review using a systematic search, including academic and grey literature with a focus on evaluation approaches or outcomes associated with patient engagement. No date limits were applied other than a cut‐off of publications after July 2018. DATA EXTRACTION AND SYNTHESIS: Data were extracted from 91 publications, coded and thematically analysed. MAIN RESULTS: A total of 18 benefits and 5 costs of patient engagement were identified, mapped with 28 possible indicators for their evaluation. Several quantitative and qualitative methods were found for the evaluation of benefits and costs of patient engagement. DISCUSSION AND CONCLUSIONS: Currently available indicators and methods are of some use in measuring impact but are not sufficient to understand the pathway to impact, nor whether interaction between researchers and patients leads to change. We suggest that the impacts of patient engagement can best be determined not by applying single indicators, but a coherent set of measures. John Wiley and Sons Inc. 2019-09-06 2020-02 /pmc/articles/PMC6978865/ /pubmed/31489988 http://dx.doi.org/10.1111/hex.12951 Text en © 2019 The Authors Health Expectations published by John Wiley & Sons Ltd This is an open access article under the terms of the http://creativecommons.org/licenses/by/4.0/ License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.
spellingShingle Review Articles
Vat, Lidewij Eva
Finlay, Teresa
Jan Schuitmaker‐Warnaar, Tjerk
Fahy, Nick
Robinson, Paul
Boudes, Mathieu
Diaz, Ana
Ferrer, Elisa
Hivert, Virginie
Purman, Gabor
Kürzinger, Marie‐Laure
Kroes, Robert A.
Hey, Claudia
Broerse, Jacqueline E.W.
Evaluating the “return on patient engagement initiatives” in medicines research and development: A literature review
title Evaluating the “return on patient engagement initiatives” in medicines research and development: A literature review
title_full Evaluating the “return on patient engagement initiatives” in medicines research and development: A literature review
title_fullStr Evaluating the “return on patient engagement initiatives” in medicines research and development: A literature review
title_full_unstemmed Evaluating the “return on patient engagement initiatives” in medicines research and development: A literature review
title_short Evaluating the “return on patient engagement initiatives” in medicines research and development: A literature review
title_sort evaluating the “return on patient engagement initiatives” in medicines research and development: a literature review
topic Review Articles
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6978865/
https://www.ncbi.nlm.nih.gov/pubmed/31489988
http://dx.doi.org/10.1111/hex.12951
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