Resources

Medicines lifecycle is critical to fostering patient access to innovative therapeutic solutions, and delivering better health outcomes for patients.

D5.3 Digital assets including website

WP5 – Dissemination and engagement

D7.3 Data Management Plan

WP7 – Project Coordination and Management

D7.5 Ethics Expert Panel Brief Activity Report

WP7 – Project Coordination and Management

D6.1 Assessment review of the existing sustainability models

WP6 Sustainability Strategy

PARADIGM at a glance

Meet the PARADIGM Consortium and get to know some interesting facts about them. PARADIGM’s mission is to provide a unique framework that enables structured, effective, meaningful, ethical, innovative, and sustainable patient engagement (PE) and demonstrates the ‘return on the engagement’ for all players.

D6.2 List of the relevant models addressing sustainability for all stakeholders

WP6 Sustainability Strategy

D7.2 Project Handbook

WP7 – Project Coordination and Management

D2.1 short report of existing patient engagement practices and processes

Patients Active in Research and Dialogues for an Improved Generation of Medicines

Communications and External Engagement Plan

The Communications and Engagement plan lays down the map for PARADIGM communications activities throughout the project. It sets the guidelines for upcoming communication events, on stakeholders to reach, on the key messaging and the tools to use to reach them.

PARADIGM – 1st Open Patient Engagement Forum 2018

Patients Active in Research and Dialogues for an Improved Generation of Medicines (PARADIGM) had its first Open Patient Engagement Forum on the 10th of April in Brussels co-organised by PARADIGM, PFMD and EUPATI. The forum had four workshops focusing on prioritisation of the PARADIGM survey topics, building the PARADIGM story, assessing the value of patient engagement and utilising the survey to identify key stakeholders and most suited methodologies for the project. Follow the link for a short report on the events of the day: https://bit.ly/2yjGr01

Evolution of the Patient Engagement Ecosystem

Medicines lifecycle is critical to fostering patient access to innovative therapeutic solutions, and delivering better health outcomes for patients.

D1.1 Survey analysis report on stakeholder-specific preferences, needs and expectations

To understand the needs, expectations and preferences from the perspective of different stakeholders, Work Package 1 (WP1) co-created with other WPs an online survey. The survey received 372 English language responses and 169 responses from 13 other European languages during the June and July in 2018. In addition to the survey, between June and October 2018, four different face-to-face consultations were carried out to involve the following vulnerable/ underrepresented and specific stakeholder groups : people with dementia, children and young 3 persons and people with rare diseases, as well as Health Technology Assessment (HTA) bodies.

Consultation on Patient Engagement on development of medicines in dementia

PARADIGM WP1 aims to gain a better understanding of the needs, expectations and aspirations of the different stakeholders involved in patient engagement in the development of medicines and research.

Report for consultation with young persons: KidsBarcelona FSJD

Online survey may not be the most adequate method for understanding the views of some patient groups. Some patients may have some specific needs that have to be considered and addressed.

Report of the Internal consultation on patient engagement sustainability

In June 2018, an internal consultation was organized by EURORDIS to explore with its members the different dimension of the sustainability of the patient engagement in medicines R&D.

Report of the PARADIGM WP1 HTA Workshop on Early Dialogues held in London on 19th October 2018

HTAi and PARADIGM convened a workshop on the 19th October 2018 with HTA Agencies to discuss patient involvement in Early Dialogues.

PARADIGM One-pager 2018

PARADIGM’s objective is to develop much needed patient engagement processes and tools for three key decision-making points of the medicines development lifecycle: Research priority setting, Design of clinical trials and Early dialogue with regulators and HTA bodies.

PARADIGM Work Package 1 Webinar – presentation

The Paradigm Work package 1 (WP1) webinar held on May 8 shared the output of the work done as a wrap up for the WP1. To recap, the objective of WP1 was to identify and understand the needs and expectations of relevant stakeholders in patient engagement, and based on those to create a set of criteria that can be used to categorise and prioritise expected patient engagement activities. Link to the video recording: https://youtu.be/kBoOluqxQ4c

PARADIGM Work Package 1 Webinar – recording

The Paradigm Work package 1 (WP1) webinar held on May 8 shared the output of the work done as a wrap up for the WP1. To recap, the objective of WP1 was to identify and understand the needs and expectations of relevant stakeholders in patient engagement, and based on those to create a set of criteria that can be used to categorise and prioritise expected patient engagement activities. Link to the presentation: https://bit.ly/2WiyjaZ

D1.2 Criteria to assess how patient engagement expectations are met

This report describes the work that was done as part of PARADIGM’s work package 1 (WP1), which aimed to identify and define stakeholders’ preferences, needs and expectations in patient engagement (PE) through an online survey and focus group consultations that were conducted in 2018. The objectives of this work were two-fold: firstly to prioritise those needs and expectations identified, and secondly, with the help of topic experts, turn those prioritised needs into a set of criteria for a good PE activity.

PARADIGM Newsletter – 6 months of impact in patient engagement

Why yet another newsletter? Well, it's about creating a community as much as it is about communicating. We want to continue to build the base of participants in co-creating solutions to make patient engagement a greater reality.

Minimum criteria for good patient engagement – two-pager (WP1)

Expectations for effective and meaningful patient engagement in three phases of the medicines development lifecycle.

Why patient engagement takes a village: a report from Patient Engagement Open Forum

The importance of collaboration, alignment and why it takes a village to achieve meaningful patient engagement (PE) was the opening call to action at the recent Patient Engagement Open Forum – Delivering patient engagement beyond aspirations. Over 250 delegates participated in the two-day immersive event which took place in Brussels, Belgium on 18–19 September, 2019.

D3.1 Reviewing of existing methods for monitoring and evaluation patient engagement

Patients Active in Research and Dialogues for an Improved Generation of Medicines. WP3 – Development of metrics for monitoring and evaluation

D4.1 Recommendations on the required capabilities for patient engagement

Patients Active in Research and Dialogues for an Improved Generation of Medicines. WP4 Co-designed recommendations and resources for patient engagement

D5.1 Report on the first open Patient Engagement Forum

WP5 – Dissemination and engagement

D5.2 Communications and External Engagement Plan

WP5 – Dissemination and engagement

PARADIGM’s digital assets

The success of PARADIGM is closely linked to the dissemination and adoption of the outcomes of the project. PARADIGM aims at ensuring an extensive outreach to a broad set of stakeholders within the medicines development community at large. In order to do that a set of digital assets were developed.

Report on the first open Patient Engagement Forum

The PARADIGM consortium led by European Patients’ Forum and EFPIA held its first forum on 10th of April 2018, which was co-organized by EUPATI (European Patients’ Academy on Therapeutic Innovation) and PFMD (Patient Focused Medicines Development).