PARADIGM

IMI project PARADIGM has launched its Patient Engagement Toolbox that brings together in one place all the project’s recommendations, tools and relevant background information to make patient engagement in medicines development easier for all. ###The toolbox is the result of a huge co-creation effort involving extensive research, surveys, focus groups, case studies, workshops, and multiple rounds of reviews.

The tools are divided into three groups: planning patient engagement; conducting patient engagement; and reporting and evaluation. Each tool comes with information detailing how the tool was produced and who contributed to its creation.

‘To make patient engagement easier for all in medicines development, several stakeholders need to work together, to come up with the most suitable solutions for all parties involved,’ says PARADIGM coordinator Mathieu Boudes of the European Patients’ Forum (EPF). ‘At PARADIGM, we’ve been extremely grateful to be able to develop the Patient Engagement Toolbox with the funding scheme of the IMI, as a true public-private partnership. To me, without the IMI, this would not have been possible’

PARADIGM is drawing to a close, but the Patient Engagement Toolbox will be maintained and accessible via the EUPATI and PFMD (Patient Focused Medicines Development) platforms.

Find out more

• View the toolbox
• Visit the PARADIGM website

The Patient Engagement Open Forum is organised jointly by IMI’s PARADIGM and EUPATI projects as well as Patient Focused Medicines Development (PFMD). ###The aim of the event is to provide a holistic perspective of patient engagement, the landscape and actors, and foster collaboration and co-creation while breaking down fragmentation and silos that are often present in patient engagement work.

This year, the event is going virtual, and will be a series of short (under two hours) online events running from June to November. Events will be recorded and published online.

Topics range from tools and recommendations for effective patient engagement, methods for monitoring and evaluation of impact and outcomes in patient engagement activities, and fair market compensation for patient input, to interactive sessions on assessing good practices in patient engagement and more.

Find out more

• Visit the event website

There is now growing recognition that patients and their representatives can and should be involved in all stages of medicines development (R&D). But how do you do this in practice, and is it worth it? IMI’s PARADIGM project was set up in 2018 to create a framework for structured, effective, meaningful and ethical patient engagement, and to demonstrate the ‘return on engagement’ for all stakeholders.###

The project focuses on patient involvement in three key points in the medicines R&D process: research and priority setting; clinical trial design; and early dialogues with regulators and health technology assessment (HTA) bodies. So what have they delivered so far? With just months to go before the end of the project in August this year, the IMI Programme Office caught up with project coordinator Mathieu Boudes of the European Patients’ Forum (EPF).

‘PARADIGM is an atypical project – very short and most of the tangible achievements are due at the end of the project,’ explains Boudes. ‘We have robustly identified what is still very much needed by all actors involved in the development of medicines and that will make the most impact in terms of patient engagement. The consortium is currently developing a monitoring and evaluation framework for stakeholders who are doing patient engagement to help them measure the impact of their initiatives. It will be a game changer to bring patient engagement to the next level.’

Read more

• IMI's news story
• PARADIGM website

On 18-19 September, IMI projects PARADIGM and EUPATI are joining forces with Patient Focused Medicines Development (PFMD) to organise the Patient Engagement Open Forum in Brussels, Belgium. ###The aim of the event is to provide a holistic perspective of patient engagement, the landscape and actors, and foster collaboration and co-creation while breaking down fragmentation and silos that are often present in patient engagement work. The agenda offers a deep dive into some ongoing patient engagement work done by many collaborative initiatives. Topics range from tools and recommendations for effective patient engagement, methods for monitoring and evaluation of impact and outcomes in patient engagement activities, and fair market compensation for patient input to interactive sessions on assessing good practices in patient engagement and more. Registration is free but obligatory.

Two IMI projects focusing on patient engagement, PARADIGM and PREFER, have signed a memorandum of understanding (MoU) to enhance collaboration between the projects and to maximise results. The MoU outlines how the projects will work together and share ideas. ###While PARADIGM is broadly focused on patient engagement at three points in the research and development process, PREFER looks at how and when it is best to perform and include patient preferences in decision making during the medical product life cycle. Through the MoU, the two projects hope to identify areas of mutual interest; identify any gaps that are hindering progress; establish collaborative activities to address these gaps; and share knowledge and data. The projects will also mutually participate in project events and use each other’s communications channels to promote news and results. In a joint statement, the projects write: ‘There is an ample opportunity to leverage the work of these projects, to avoid duplicate efforts as well as maximise results.’