Evidence map›Paper›PMID 33629470›Full record

ArticleHealth expectations : an international journal of public participation in health care and health policy2021

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 and 3 more

Abstract read
In one paragraph

Article in Health expectations : an international journal of public participation in health care and health policy, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 23 papers.

0numbers the graph read from it
0cells of the map it votes in
23citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

23 citing papers in PubMed.

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  10. Understanding Co-Creation in a Research Partnership Programme Exploring Patient-Driven Innovations: A Qualitative Longitudinal Study.Health expectations : an international journal of public participation in health care and health policy · 2024
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

13 authors.

Lidewij Eva VatAthena Institute, Vrije Universiteit Amsterdam, Amsterdam, The Netherlands.ORCID 0000-0003-0077-6602
Teresa FinlayNuffield Department of Primary Care Health Sciences, University of Oxford, Oxford, UK.ORCID 0000-0003-2538-8366
Paul RobinsonMerck Sharp & Dohme Ltd. Hoddesdon, Hertfordshire, UK.
Giorgio BarbareschiEuropean AIDS Treatment Group (EATG), Dusseldorf, Germany.
Mathieu BoudesEuropean Patients' Forum (EPF), Chaussée d'Etterbeek, Brussels, Belgium.
Ana Maria Diaz PonceAlzheimer Europe, Luxembourg, Luxembourg.
Michaela DinboeckNovartis Pharma AG, Basel, Switzerland.
Lukas EichmannNovo Nordisk A/S, Bagsvaerd, Denmark.
Elisa FerrerEURORDIS-Rare Diseases Europe, Paris, France.
Sevgi E FruytierAthena Institute, Vrije Universiteit Amsterdam, Amsterdam, The Netherlands.ORCID 0000-0002-1165-147X
Claudia HeyMerck Healthcare KGaA, Darmstadt, Germany.
Jacqueline E W BroerseAthena Institute, Vrije Universiteit Amsterdam, Amsterdam, The Netherlands.ORCID 0000-0002-8478-3422
Tjerk Jan Schuitmaker-WarnaarAthena Institute, Vrije Universiteit Amsterdam, Amsterdam, The Netherlands.ORCID 0000-0001-5158-581X

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundPatient 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 CONTRIBUTION: Five patient groups were involved in all phases of the study (design, conduct, interpretation of data) and in writing the manuscript.

Indexed as

MedicinePatient ParticipationBenchmarkingHumansResearch Designimpactmetricsmonitoring and evaluationpatient engagementpatient participationquality indicators

Identifiers

PMID33629470
PMCPMC8077089

What OpenQuestion holds

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Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.