Evaluation of patient engagement in medicine development: A multi‐stakeholder framework with metrics

Lidewij Eva Vat; Teresa Finlay; Paul Robinson; Giorgio Barbareschi; Mathieu Boudes; Ana Maria Diaz Ponce; Michaela Dinboeck; Lukas Eichmann; Elisa Ferrer; Sevgi E. Fruytier; Claudia Hey; Jacqueline E. W. Broerse; Tjerk Jan Schuitmaker‐Warnaar

doi:10.1111/hex.13191

journal article Open Access Feb 24, 2021

Evaluation of patient engagement in medicine development: A multi‐stakeholder framework with metrics

Lidewij Eva Vat

Teresa Finlay

Paul Robinson Giorgio Barbareschi Mathieu Boudes Ana Maria Diaz Ponce Michaela Dinboeck Lukas Eichmann Elisa Ferrer Sevgi E. Fruytier

Claudia Hey Jacqueline E. W. Broerse

Tjerk Jan Schuitmaker‐Warnaar

Health Expectations Vol. 24 No. 2 pp. 491-506 · Wiley

View at Publisher Save 10.1111/hex.13191

Abstract

AbstractBackgroundPatient engagement is becoming more customary in medicine development. However, embedding it in organizational decision‐making remains challenging, partly due to lack of agreement on its value and the means to evaluate it. The objective of this project was to develop a monitoring and evaluation framework, with metrics, to demonstrate impact and enhance learning.MethodsA consortium of five patient groups, 15 biopharmaceutical companies and two academic groups iteratively created a framework in a multi‐phase participatory process, including analysis of its application in 24 cases.ResultsThe framework includes six components, with 87 metrics and 15 context factors distributed among (sub)components: (a) Input: expectations, preparations, resources, representativeness of stakeholders; (b) Activities/process: structure, management, interactions, satisfaction; (c) Learnings and changes; (d) Impacts: research relevance, study ethics and inclusiveness, study quality and efficiency, quality of evidence and uptake of products, empowerment, reputation and trust, embedding of patient engagement; (e) Context: policy, institutional, community, decision‐making contextual factors. Case study findings show a wide variation in use of metrics. There is no ‘one size fits all’ set of metrics appropriate for every initiative or organization. Presented sample sets of metrics can be tailored to individual situations.ConclusionIntroducing change into any process is best done when the value of that change is clear. This framework allows participants to select what metrics they value and assess to what extent patient engagement has contributed.Patient contributionFive patient groups were involved in all phases of the study (design, conduct, interpretation of data) and in writing the manuscript.

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References

Details

Published: Feb 24, 2021
Vol/Issue: 24(2)
Pages: 491-506
License: View

Authors

L

Lidewij Eva Vat

Athena Institute Vrije Universiteit Amsterdam Amsterdam The Netherlands

T

Teresa Finlay

Nuffield Department of Primary Care Health Sciences University of Oxford Oxford UK

P

Paul Robinson

Merck Sharp & Dohme Ltd. Hoddesdon Hertfordshire UK

G

Giorgio Barbareschi

European AIDS Treatment Group (EATG) Dusseldorf Germany

M

Mathieu Boudes

European Patients' Forum (EPF) Chaussée d’Etterbeek Brussels Belgium

A

Ana Maria Diaz Ponce

Alzheimer Europe Luxembourg Luxembourg

M

Michaela Dinboeck

Novartis Pharma AG Basel Switzerland

L

Lukas Eichmann

Novo Nordisk A/S Bagsvaerd Denmark

E

Elisa Ferrer

EURORDIS‐Rare Diseases Europe Paris France

S

Sevgi E. Fruytier

Athena Institute Vrije Universiteit Amsterdam Amsterdam The Netherlands

C

Claudia Hey

Merck Healthcare KGaA Darmstadt Germany

J

Jacqueline E. W. Broerse

Athena Institute Vrije Universiteit Amsterdam Amsterdam The Netherlands

T

Tjerk Jan Schuitmaker‐Warnaar

Athena Institute Vrije Universiteit Amsterdam Amsterdam The Netherlands

Funding

Innovative Medicines Initiative Award: 777450

Cite This Article

Lidewij Eva Vat, Teresa Finlay, Paul Robinson, et al. (2021). Evaluation of patient engagement in medicine development: A multi‐stakeholder framework with metrics. Health Expectations, 24(2), 491-506. https://doi.org/10.1111/hex.13191

Evaluation of patient engagement in medicine development: A multi‐stakeholder framework with metrics

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