PARADIGM 2019 report A public-private partnership focusing on driving systematic, effective and sustainable patient engagement

Introduction from the Programme Manager

The IMI-PARADIGM partnership and collaboration has been a significant project for the Synergist and it will have far-reaching outcomes with high expectations to accelerate our efforts in making systematic patient engagement happen. The end of 2019 saw 22 months completed on the project, bringing us to the important and impactful final stretch, with just eight remaining months. 2019 was a decisive year in many ways.

Firstly, The Synergist concluded one of the two work packages that it co-led; the work to create a robust knowledge base of stakeholders’ expectations and needs in patient engagement and a co-prioritised list of criteria that defines good patient engagement practices. These outcomes are now being used for the gap analysis which gives us indications which tools are missing in order for us to facilitate more systematic, meaningful and effective patient engagement to happen.

Secondly, in addition to the collaborative leadership approach, The Synergist has brought digital and technical know-how to the consortium, co-leading the engagement and communications work and supporting partners in technical matters that the patient engagement tools require. Lastly, but perhaps most importantly, The Synergist has contributed in stakeholder mapping and connected partners and programs to the PARADIGM work and vice versa where it has been relevant. This has brought more synergies to the patient engagement ecosystem and more collaboration to accelerate the adoption of patient engagement throughout.

The remaining eight months are exciting for us. We will see increased engagement within and beyond the PARADIGM consortium and are able to share finalised outcomes with the external world with an increasing pace. Everything that PARADIGM stands for and aims to produce will culminate in the last Patient Engagement Open Forum in June 2020, where the outcomes of the project will be presented, tested and validated along with other ongoing collaborative efforts. This is a celebration of patient engagement and though the final eight months will be short, the outcomes will have a far-reaching impact on the ecosystem.

Chi Pakarinen Programme Manager
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About the project

PARADIGM is a 34-partner European funded Innovative Medicines Initiative - a public-private-partnership that focuses on driving systematic, effective, sustainable and measurable patient engagement that is also meaningful to the patient community. The work focuses specifically on three “decision-making points” where 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.

The Synergist brings the expertise of effective and impactful co-creation through shared leadership and plays a key role in co-leading two work streams that 1) focus on the co-creation of the minimal criteria for patient engagement activities to meet the stakeholders’ needs and expectations and 2) the communication and dissemination of the project’s outputs, in order to ensure broad reach and high adoption for the expected tools.

2019 Achievements

The Synergist played its role in leading and concluding the work defining stakeholders’ preferences, needs and expectations.

Significant milestones include; launching an online survey in 24 languages that received over 500 responses from 22 countries across all targeted stakeholder groups; conducting 4 focus group consultations to facilitate participation for specific and some underrepresented stakeholder groups such as young people, people with dementia and HTA agencies and successful organisation of the Delphi process overlooked by 3 expert panels and a total of 79 participants.

24
Online survey in 24 languages
500
Responses
22
Countries
4
Focus group consultations
3
Expert panels
79
Participants

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

Criteria to assess how patient engagement expectations are met
- Official report
- Two-pager document
- Work Package 1 Webinar

The Synergist continued to co-lead the dissemination and engagement work stream by keeping at pace with the communication plan aligned with the consortium’s strategy. Digital assets have been co-developed to support communication needs of partners within and beyond the PARADIGM community.

Together with IMI PARADIGM and European Patients' Academy (EUPATI), the Synergist co-organised the 2019 Patient Engagement Open Forum which welcomed 200+ delegates to 7 interactive sessions held over two days. This included participation from PARADIGM members and The PARADIGM International Liaison Group (PILG) representatives, as well as external participants.

200+
Delegates
7
Interactive sessions
79
Participants

The aim of such efforts is to forge cohesiveness in a fragmented landscape through the engagement of all stakeholders within and beyond PARADIGM. These events also serve as a way to engage with specific stakeholder groups that PARADIGM focuses on (i.e. underrepresented and vulnerable groups).

Ongoing communication and engagement efforts throughout the project channel has made PARADIGM a well-known name within the patient engagement community. This has a direct impact on the potential of adoption of the project outcomes and tools.

In contribution to building the sustainability model and other tools within the project, the Sustainability Roadmap aims to set the vision for ideal patient engagement and acts as a call to action for all stakeholders who want to accelerate their efforts and make the vision come true. The Synergist contributes in many of the patient engagement tools that will be released towards the end of the project by providing insights, technical expertise, and connecting with relevant experts and external work streams.

The PARADIGM Team

The PARADIGM Team consists of:

  • Nicholas Brooke Executive Director
  • Chi Pakarinen Program Manager
  • Helena Harnik Synergist Programs Director
  • Roxana Radu Communications Manager
  • Gulwish Ahmed Communications Coordinator
  • Bonaventure Ikediashi Project Coordinator
  • Anne-Marie Hamoir Senior Consultant

Consortium Partners

They made all this possible

“Our collaborative experience within PARADIGM project has been mainly related to the building of consensus among stakeholders to develop a set of criteria for good practice on the basis of their needs and expectations for effective patient engagement. The Delphi methodology deployed is greatly demanding in terms of careful planning, personal interaction, trust and balance between methodological rigours and tailoring to panellist’s circumstances... In their role as overall WP coordinator, Synergist has proven to be supportive and innovative through all the process, always facilitating conditions and providing the other pieces of work needed to feed ours. As a result we have enjoyed the kind and productive environment that guarantees outcomes on time and according to high quality standards.”

Maria Jose Vicente-Edo HTA analyst

“As part of my work in PARADIGM, representing Alzheimer Europe, I have worked closely with the Synergist in several activities, and in particular with Chi Pakarinen. Their work is very professional, collaborative and inclusive of all different perspectives and stakeholders. For example, it was very productive and enjoyable working together on the understanding of the needs, expectations and aspirations of patients, particularly those who are typically vulnerable, in the context of patient engagement; it was very positive how open they were to different perspectives and arguments.”

Ana Diaz Project Officer