About the project

PARADIGM was a public-private-partnership funded by the Innovative Medicines Initiative that focuses on driving systematic, effective, sustainable and measurable patient engagement that is also meaningful to the patient community.

The project started in March 2018 and ended in November 2020. PARADIGM focused specifically on creating tools for increased patient engagement in three specific time points in medicines development where PE tools and guidances are still proportionately underdeveloped compared to other areas (i.e. clinical trials): research priority setting, the design of clinical trials, and early dialogues with regulators and Health Technology Assessment bodies.

As one of the major contributing partners, The Synergist brought the expertise of effective and impactful co-creation through shared leadership and played a key role in co-leading two work streams that 1) focused on the co-creation of the minimal criteria for PE activities to meet the stakeholders’ needs and expectations and 2) the community engagement, communication and dissemination of the project’s outputs, in order to ensure broad reach and high adoption for the expected tools.

2020 Achievements

Third Edition of Patient Engagement Open Forum (PEOF)

The PEOF2020 was organised between 25 June and 23 November 2020 and took place virtually due to the COVID-19 pandemic. The event was co-organized with European Patients’ Academy (EUPATI) and the Patient Focused Medicines Development (PFMD).

The event attracted 1509 registrations across the 8 event days and 17 live virtual sessions held across Europe and the US. Attendees joined these sessions from 57 countries. During PEOF, PARADIGM tools were presented to the wider patient engagement community to build on the recognisability ensuring uptake and continuity at the end of the project.

In addition to introducing and discussing the tools delivered by PARADIGM, the overall objective, just like in previous years, was 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.

With the Synergist co-leading the coordination and communication efforts, the PEOF2020 series was promoted on the dedicated website as well as across the social media platforms of all three co-organisers.

All sessions have been recorded and posted on the PEOF website, providing an opportunity for everyone to follow the events even if they were not available to attend the live session.

Coordination of the tools’ design and developing the PARADIGM Toolbox

During 2020, the Synergist coordinated and provided the design for the 10 PARADIGM outputs in various iterations. The final tools can be found from PARADIGM toolbox, a dedicated landing page planned together with EPF and EUPATI, and developed by the Synergist.

About the project

The objective of the IMI Gravitate Health project is to improve patient access, understanding and adherence to patient information. Today, being unable to easily access and understand high-quality health information is a challenge, impacting the day-to-day decisions people make in the management of their health and care.

Lack of adherence to treatment is an established public health concern, with significant effects on the individual patient, as well as healthcare systems as a whole.

The Gravitate Health mission is to equip and empower citizens as users with digital tools that make them confident, active, and responsive in their patient journey, specifically encouraging safe use of medicines for improved adherence, better health outcomes and higher quality of life.

Future benefits for personal health can only be achieved when actionable, understandable, relevant, reliable and evidence-based information meets the user’s needs, health context, and literacy level. This project's ambition is to provide a key piece to advancing this vision, the Gravitate Health Lens or G-lens, to provide personalized, focused (not concealed or filtered) content from trusted health information sources to the user, and demonstrate its benefits for access to and under- standing of information, and adherence through the patient journey.

Building on our expertise in bringing together diverse people, organizations and experts to sustainably solve societal issues, The Synergist is taking a leading role in two work packages as a sub-task lead. In one work package, we will support the foundation of the project by leading the effort to identify and prioritise stakeholder needs by utilising a delphi methodology.

In the second work package, our role is to support the consortium throughout the project by identifying consortium needs in engaging with stakeholders, helping to identify opportunities and potential areas of duplication, and to co-create stakeholder engagement tools.

About the project

The SYNCHROS project (SYNergies for Cohorts in Health: integrating the ROle of all Stakeholders) seeks to address and solve a highly complex issue on data fragmentation in population-based, patient and clinical trial cohorts. It’s objective is to come with a recommendation to address the lack of data integration and harmonisation across the different cohorts.

This project requires extensive stakeholder involvement, a systematic approach and methodology, and navigation through a complex system. The Synergist’s unique expertise and experience in solving complex societal issues by addressing broken systems and our ability to act as an incubator and gather relevant partners around a shared goal was recognised to be of key value for this EU project.

2020 Achievements

In 2020, The Synergist, as leader of Work Package 4, completed the deliverables of this WP in coordination with the other partners (PSSJD, NIOM, SPF, NTNU, URV). Two reports were submitted and approved by the European Commission (Deliverable 4.2 and 4.3), which analyse the strengths, limitations, barriers and opportunities of using emerging and new data collection technologies in cohort selection.

Based on the deliverables of WP4, The Synergist has also been coordinating the efforts for a scientific publication to more effectively disseminate the findings, taking practical examples from the current COVID-19 pandemic. The paper will explore the potential benefits and limitations of using new and emerging communication technologies for data collection. This paper is part of a complementary series of SYNCHROS publications, and it is foreseen to be completed by the end of Q1 2021.

About the project

The power of Share4Rare lies in its community. The objective is clear: creating a platform where rare disease patients, caregivers and clinicians can find much-needed support, while contributing data to the research efforts taking place in the field. The platform was launched during 2019 and The Synergist provided the project team with ongoing advice on how to continuously improve it.

In 2020 The Synergist focused on two aspects of the platform development:

Online community engagement

Community engagement has been an essential journey for the Share4rare consortium and The Synergist collaborative approach supported it from the start.

The work started with early engagement, even before the actual platform launch - the user feedback and input informed many decisions about our platform - from its design, to improvements and gamification. More information can be found in the newly published article: Global Collaborative Social Network (Share4Rare) to Promote Citizen Science in Rare Disease Research: Platform Development Study. After the platform launch, we continued to consistently engage with our target audiences either through social channels, high quality content, online events etc. 2020 saw the move of all engagement activities in the digital space, solidifying the need for effective tactics and follow-up.

Captology tactics

Attracting the right users and offering them value to keep them engaged was always a key success factor for Share4Rare. The Synergist contributed with its expertise through the development of a captology plan, as well as ongoing recommendations regarding its implementation and optimisation.

The plan involved co-created techniques for user attraction and for the maximization of the users’ activity once they reach the platform. These have been the result of multi-stakeholder co-creation activities inside the consortium, involving the expert partners at every step of the way, as well as outside the consortium, starting with patients and patients organisation, but also researchers and medical professionals.