Mathieu Boudes – (EPF) PARADIGM Coordinator

One year. This is the time that remains for PARADIGM to have a tangible impact on the patient engagement in medicines R&D ecosystem. All the workstreams, as well as all our partners, are fully involved as we seek to deliver what will make a difference. The phase of aiming to understand and prioritize the gaps in patient engagement practices and the process will end soon, allowing the new phase to begin, that of developing the necessary tools to systematise patient engagement. Meanwhile, all the other elements of this significant project are converging to deliver the Monitoring and Evaluation Framework on time and by the end of the year.

Without tools the cultural change is nothing and without the cultural change, the tools are nothing. 

To this end, PARADIGM, PFMD and EUPATI will co-power the Patient Engagement Open forum (#PEOF2019 for social media)on September 18th and 19th. This is a two-day event where we will explore patient engagement beyond mere aspirations and work together in a multi-stakeholder context in order to help make it happen.

The Forum aims 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 of the two days 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.

The attendees will get an in-depth overview of the impactful collaborative workstreams in the patient engagement ecosystem and network with 200+ professionals from the healthcare industry, patient advocates and organisations, regulatory representatives and nonprofits that are working together to make patient engagement the norm through tools, recommendations, good practices, framework and capacity building.

If you did not register, a few seats are still available here, but if you cannot join us in person, there will be an online interactive session on ‘Patient engagement is everybody’s responsibility, how to best reach beyond the easy targets’, to ensure that geographical, budgetary or any other constraint does not prevent you from participating!

You can find all the information and the full programme on the Forum website, but here is a snapshot of what you can expect:

  • Learning from good engagement practices and applying to you everyday work

The session aims to inspire participants through real examples of patient engagement good practices from environments involving multiple stakeholders. Moreover, it will show how different organisations have used the PFMD Patient Engagement Quality Guidance and the 7 Quality Criteria to elevate their initiatives, teaching participants how to apply the model on their own projects. 

  • Legal contracts between patients, pharma and researchers – where are we and what is missing?

More details coming up soon

  • Understanding and prioritising gaps in patient engagement practices and processes

During this session, the participants bring their collective expertise to influence and inform the co-prioritisation and refinement of identified gaps in the practices and processes of patient engagement. This work, done through small working groups, interactively and in real-time, will help to inform the co-creation of the next generation of patient engagement tools.

  • Patient engagement is everybody’s responsibility, how to best reach beyond the easy targets?​ (online session)

Antoine de Saint-Exupéry once said that ‘If you want to build a ship, don’t drum up people together to collect wood and don’t assign them tasks and work, but rather teach them to long for the endless immensity of the sea.’ Isn’t easy to expand this quote to the patient engagement ecosystem? More pragmatically, this session will address the ‘how to go beyond the easy targets when it comes to patient engagement in medicines R&D?’. It is everybody’s responsibility, let’s make it more concrete together.

  • Toolkit for compensating patients and patient groups for their expert input

The session will describe the Fair Market Value initiative, processes and methods undertaken, status, and deliverables, and to share information about lessons learned and next steps for the future. The National Health Council Fair Market Value Calculator Patient Engagement Activities lists will be provided and participants will be asked to discuss and provide their input from their own European perspective. As a second topic for interactive discussion, challenges still to be resolved will be posed to the group for brainstorming potential solutions.

  • Metrics to determine the shared value of patient engagement

The session will show participants how to monitor and evaluate (their own) patient engagement activities. It will also provide participants with some practical examples of determined value of patient engagement.

The group will also discuss the feasibility, strengths and weaknesses of the developed framework and the menu of metrics for Monitoring and Evaluation of Patient Engagement activities.

  • Creating future patient engagement tools

The participants will bring their collective expertise to influence and inform the construction of new tools which will shape the future of patient engagement, based on previously presented evidence of gaps in Part #1 (session 3). By the end of the session, they will be aware of recently developed materials and have collaboratively arrived at the direction for future co-creation of the next generation of patient engagement tools. They will also have increased their understanding of priorities and material needed for patient engagement.

On the last afternoon, ~ 120 participants will participate during three co-creation workshops in ‘Building further a global patient engagement framework’ focusing on the early development and preclinical phases, on the clinical phases and on plain language summaries for clinical trials and publications.

(NB: in order to ensure an active workshop for all, the number of participants is limited to 40 in each session, and will be chosen by organisers based on the principle of representativeness of stakeholders in each workshop).

This global event will be a game-changer, as three different initiatives are coming together to co-organise the event, aiming to work hard and with a kindred spirit, to make patient engagement in medicines R&D more systematic, meaningful and sustainable.