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 JournalReview articleAcademicpeer-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 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 languageEnglish
Pages (from-to)5-18
Number of pages14
JournalHealth Expectations
Issue number1
Early online date6 Sep 2019
Publication statusPublished - 2019

Bibliographical note

© 2019 The Authors Health Expectations published by John Wiley & Sons Ltd.


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

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