PARADIGM is done, but its mission is just beginning
12 March 2021
General Global perspective Health Services Research Staff stories
Now the project has wrapped up, Teresa Finlay gives a brief overview of the outputs and the department member's roles in the Patients Active in Research and Dialogues for an Improved generation of Medicines (PARADIGM) project.
The Patients Active in Research and Dialogues for an Improved Generation of Medicines (PARADIGM) project came to a successful conclusion on Nov 30th 2020 after two and a half years.
The project aimed to provide a unique framework that enables structured, effective, meaningful, ethical, innovative and sustainable patient engagement (PE).
The focus for PARADIGM’s work was medicines development and the project design centred on co-production. In tandem with the PFMD and EUPATI initiatives, PARADIGM has demonstrated that real change can happen when stakeholders come together with a common goal.
Five members of the IRIHS team worked on PARADIGM from March 2018 to November 2020. Stuart Faulkner managed the Oxford arm of the project, working with Suzanne Ii on the Work Package (WP) 1 survey and Delphi study to understand stakeholders’ needs for effective PE.
Under Stuart’s leadership WP2 identified patient engagement (PE) practices and completed a gap analysis. With a scoping review, WP1 and 2 fed into the evidence-based PE Monitoring and Evaluation Framework that Teresa Finlay worked on in WP3 with colleagues at the Athena Institute of the Vrije Universiteit in Amsterdam. Laiba Husain joined the team in 2019 contributing to WP2 and 3, while Nick Fahy was the University’s principal investigator for the project, providing expertise in EU health policy and collaborative working for change.
The work of PARADIGM is now being realised with the impact of its outputs. The new open access toolkit supports PE in medicines development. The PE Monitoring and Evaluation Framework is freely available; with direct relevance for medicines development, it also has wider application for PE in health research more broadly and is worth a look by anyone engaging patients in their health research.
A diverse community of more than 10,000 people have been engaged through three Open Forums; a forward-facing legacy open-forum platform has been initiated by the three lead consortium partners and several papers have been published by the multi-stakeholder consortium. The Oxford team have published the key papers below, with more to come.
Vat L, Finlay T, Jan Schuitmaker-Warnaar T, Fahy N, Robinson P, Boudes M, Diaz A, Ferrer E, Hivert V, Purman G, Kürzinger M, Kroes R, Hey C, Broerse J. 2020 Evaluating the "return on patient engagement initiatives" in medicines research and development: A literature review. Health Expectations, 23(1):5-18. DOI: 10.1111/hex.12951 [online] https://onlinelibrary.wiley.com/doi/pdf/10.1111/hex.12951
Faulkner S, Ii S, Pakarinen C, Somers F, Vincente Edo M, Prieto Remon L, Diaz Ponce A, Gove D, Ferrer E, Nafria B, Bertelsen N, Boudes M, Brookes N, Moutet A, Fahy N 2021 Understanding multi‐stakeholder needs, preferences and expectations to define effective practices and processes of patient engagement in medicine development: A mixed‐methods study. Health Expectations. DOI: 10.1111/hex.13207 [online] https://doi.org/10.1111/ hex.13207
Vat L, Finlay T, Robinson P, Barbareschi G, Boudes M, Diaz Ponce A, Dinboeck M, Eichmann l, Ferrer E, Fruytier S, Hey C, Broerse J, Schuitmaker-Warnaar T. 2021
Evaluation of patient engagement in medicine development: A multi‐stakeholder framework with metrics. Health Expectations. DOI: 10.1111/hex.13191 [online] https://doi.org/10.1111/hex.13191