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

Lidewij Eva Vat; Teresa Finlay; Tjerk Jan Schuitmaker-Warnaar; Nick Fahy; Paul Robinson; Mathieu Boudes; Ana Diaz; Elisa Ferrer; Virginie Hivert; Gabor Purman; Marie Laure Kürzinger; Robert A. Kroes; Claudia Hey; Jacqueline E.W. Broerse

doi:10.1111/hex.12951

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

Lidewij Eva Vat^*
, Teresa Finlay
, Tjerk Jan Schuitmaker-Warnaar
, Nick Fahy
, Paul Robinson
, Mathieu Boudes
, Ana Diaz
, Elisa Ferrer
, Virginie Hivert
, Gabor Purman
, Marie Laure Kürzinger
, Robert A. Kroes
, Claudia Hey
, Jacqueline E.W. Broerse

^*Corresponding author for this work

Research output: Contribution to Journal › Review article › Academic › peer-review

Abstract

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.

Original language	English
Pages (from-to)	5-18
Number of pages	14
Journal	Health Expectations
Volume	23
Issue number	1
Early online date	6 Sept 2019
DOIs	https://doi.org/10.1111/hex.12951
Publication status	Published - 2019

Bibliographical note

Funding

Funding information This study was funded by PARADIGM. PARADIGM is a public-private partnership and is co-led by the European Patients’ Forum and the European Federation of Pharmaceutical Industries and Associations (EFPIA). PARADIGM is receiving funding from the Innovative Medicines Initiative Joint Undertaking 2. This Joint Undertaking receives support from the European Union's Horizon 2020 research and innovation programme and EFPIA. We want to thank Nicole Goedhart from the Athena Institute for assisting with the analysis. We also would like to thank Carina Pittens from the Athena Institute for reviewing the first drafts. We are grateful for the support of Nia Roberts, librarian at the University of Oxford. Furthermore, we very much appreciate the feedback from Joanna Crocker from the University of Oxford and María José Vicente Edo from Instituto Aragonés de Ciencias de la Salud.

Funders	Funder number
Athena Institute
European Patients’ Forum
Instituto Aragonés de Ciencias de la Salud
PARADIGM
Horizon 2020 Framework Programme	777450
European Federation of Pharmaceutical Industries and Associations
European Commission
Innovative Medicines Initiative

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

SDG 16 Peace, Justice and Strong Institutions

Keywords

evaluation
framework
impact
literature review
medicines development
metrics
patient and public involvement
patient engagement
patient participation
research

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10.1111/hex.12951

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Cite this

Vat, L. E., Finlay, T., Schuitmaker-Warnaar, T. J., Fahy, N., Robinson, P., Boudes, M., Diaz, A., Ferrer, E., Hivert, V., Purman, G., Kürzinger, M. L., Kroes, R. A., Hey, C., & Broerse, J. E. W. (2019). Evaluating the "return on patient engagement initiatives" in medicines research and development: A literature review. Health Expectations, 23(1), 5-18. https://doi.org/10.1111/hex.12951

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title = "Evaluating the {"}return on patient engagement initiatives{"} in medicines research and development: A literature review",

abstract = "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.",

keywords = "evaluation, framework, impact, literature review, medicines development, metrics, patient and public involvement, patient engagement, patient participation, research",

author = "Vat, \{Lidewij Eva\} and Teresa Finlay and Schuitmaker-Warnaar, \{Tjerk Jan\} and Nick Fahy and Paul Robinson and Mathieu Boudes and Ana Diaz and Elisa Ferrer and Virginie Hivert and Gabor Purman and K{\"u}rzinger, \{Marie Laure\} and Kroes, \{Robert A.\} and Claudia Hey and Broerse, \{Jacqueline E.W.\}",

note = "{\textcopyright} 2019 The Authors Health Expectations published by John Wiley \& Sons Ltd.",

year = "2019",

doi = "10.1111/hex.12951",

language = "English",

volume = "23",

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journal = "Health Expectations",

issn = "1369-6513",

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Vat, LE, Finlay, T, Schuitmaker-Warnaar, TJ, Fahy, N, Robinson, P, Boudes, M, Diaz, A, Ferrer, E, Hivert, V, Purman, G, Kürzinger, ML, Kroes, RA, Hey, C & Broerse, JEW 2019, 'Evaluating the "return on patient engagement initiatives" in medicines research and development: A literature review', Health Expectations, vol. 23, no. 1, pp. 5-18. https://doi.org/10.1111/hex.12951

TY - JOUR

T1 - Evaluating the "return on patient engagement initiatives" in medicines research and development

T2 - A literature review

AU - Vat, Lidewij Eva

AU - Finlay, Teresa

AU - Schuitmaker-Warnaar, Tjerk Jan

AU - Fahy, Nick

AU - Robinson, Paul

AU - Boudes, Mathieu

AU - Diaz, Ana

AU - Ferrer, Elisa

AU - Hivert, Virginie

AU - Purman, Gabor

AU - Kürzinger, Marie Laure

AU - Kroes, Robert A.

AU - Hey, Claudia

AU - Broerse, Jacqueline E.W.

PY - 2019

Y1 - 2019

N2 - 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.

AB - 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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KW - framework

KW - impact

KW - literature review

KW - medicines development

KW - metrics

KW - patient and public involvement

KW - patient engagement

KW - patient participation

KW - research

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UR - https://www.scopus.com/pages/publications/85071882773#tab=citedBy

U2 - 10.1111/hex.12951

DO - 10.1111/hex.12951

M3 - Review article

C2 - 31489988

SN - 1369-6513

VL - 23

SP - 5

EP - 18

JO - Health Expectations

JF - Health Expectations

IS - 1

ER -

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

Abstract

Bibliographical note

Funding

UN SDGs

Keywords

Access to Document

Persistent URL (handle)

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