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Patients Active in Research and Dialogues for an Improved Generation of Medicines: Advancing meaningful patient engagement in the life cycle of medicines for better health outcomes.

Deliverables

Digital assets including website

Delivery of the digital assets that are key to efficiently communicate about the Project.

Review existing methods for monitoring and evaluation patient engagement

This report will describe the outcomes and impacts of patient engagement at different points in the medicine development lifecycle.

Report on final Open Patient Engagement Forum

This report will gather the proceedings of the final Patient Engagement Open Forum that due the the COVID-19 has transformed into an online event through the M28 to M33 of the project and that will allow a better implement the following final actions of the project: restructuring the PEOF2020, with several online webinars, workshops and masterclasses; and maximising the relevance of results through better engagement with stakeholders around the tools and to foster their uptake.

Recommendations on stakeholders’ required capabilities for patient engagement in R&D

Document with recommendations on how to develop the stakeholders’ required capabilities to implement effective patient engagement in R&D.

Ethics Expert Panel brief activity report

This report includes a monitoring of the activities carried out by the EEP during the first 12 months of the project.

M&E frameworks for assessing outcomes and impact

Final report for transfer to WP4&5.

Patient engagement toolbox

Platform containing capacity building tools on how to implement patient engagement in R&D processes. The toolbox will include all WP4 deliverables as well as templates and checklists. Change of type of deliverable from DEC (Websites, patents filings, press & media actions, videos, etc.), to R (Report), as this new format will allow us to further explain the PE toolbox and the PARADIGM tools as well as to define the required IT specifications for hosting the toolbox and the requirements and approach for hosting the PARADIGM tools.

Ethics Expert Panel final activity report

This report includes a monitoring of the activities carried out by the EEP during the second phase of the project.

Report on interim Open Patient Engagement Forum

This report will gather the proceedings of the 1st Open Patient Engagement Forum.

Criteria to assess how patient engagement expectations are met

A list of comprehensive criteria for assessing patient engagement practices linked to a score on operational, technical levels.

Report on the first open Patient Engagement Forum

This report will gather the proceedings of the 1st Open Patient Engagement Forum.

Communication and external engagement plan

The plan is instrumental to operationalize an efficient communication and engagement beyond the consortium partners to trigger engagement will all relevant stakeholders

Ethical Framework

Reference document aimed at establishing the guiding ethical principles of the working practice within the consortium.

Code of conduct and guidance for patient engagement in R&D

Set of documents on efficient implementation of patient engagement including a code of conduct and guidelines on how to overcome potential conflicts of interest.

Sustainability of PARADIGM outputs

The report will list a defined sustainability plan of the main project outputs generated by the different WP than ensure these outputs are used by the community after the end of the project.

Data Management Plan

Reference document aimed at supporting the management and monitoring of the data collected throughout the project. This deliverable will specifically address the identification and monitoring of any personal data protection issues that may arise during the project. This plan -including the monitoring of personal data protection matters- will be updated at M12 (D7.5) for the interim review and at M30 (D7.7) at the end of the project.

Survey analysis report on stakeholder-specific preferences, needs and expectations

Description on highlight priorities for key stakeholders to inform other WPs. This is an internal output, but an interim report will be communicated via the project’s own website at this point.

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Publications

Evaluating the “return on patient engagement initiatives” in medicines research and development: A literature review

Author(s): 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
Published in: Health Expectations, Issue 23/1, 2019, Page(s) 5-18, ISSN 1369-6513
DOI: 10.1111/hex.12951

Understanding multi‐stakeholder needs, preferences and expectations to define effective practices and processes of patient engagement in medicine development: A mixed‐methods study

Author(s): Stuart D Faulkner, Suzanne Sayuri Ii, Chi Pakarinen, Fabian Somers, Maria Jose Vicente Edo, Lucia Prieto Remon, Ana Diaz Ponce, Dianne Gove, Elisa Ferrer, Begonya Nafria, Neil Bertelsen, Mathieu Boudes, Nicholas Brooke, Alexandra Moutet, Nick Fahy
Published in: Health Expectations, 2021, ISSN 1369-6513
DOI: 10.1111/hex.13207