Evaluating the "return on patient engagement initiatives" in medicines research and development: A literature review.
evaluation
framework
impact
literature review
medicines development
metrics
patient and public involvement
patient engagement
patient participation
research
Journal
Health expectations : an international journal of public participation in health care and health policy
ISSN: 1369-7625
Titre abrégé: Health Expect
Pays: England
ID NLM: 9815926
Informations de publication
Date de publication:
02 2020
02 2020
Historique:
received:
14
03
2019
revised:
02
07
2019
accepted:
17
07
2019
pubmed:
7
9
2019
medline:
23
4
2021
entrez:
7
9
2019
Statut:
ppublish
Résumé
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. Our aim was to review the literature on monitoring and evaluation of patient engagement, with a focus on indicators and methods. 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 were extracted from 91 publications, coded and thematically analysed. 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. 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.
Sections du résumé
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.
Identifiants
pubmed: 31489988
doi: 10.1111/hex.12951
pmc: PMC6978865
doi:
Types de publication
Journal Article
Research Support, Non-U.S. Gov't
Review
Langues
eng
Sous-ensembles de citation
IM
Pagination
5-18Informations de copyright
© 2019 The Authors Health Expectations published by John Wiley & Sons Ltd.
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