Patient Engagement
Open Forum

Event Highlights,
2019 edition

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Patient Engagement Open Forum 2019 in numbers

200+

Attendees

140+

Organisations

1,000+

Livestream views

7

Interactive sessions

100,000+

Social media exposure

Events hashtags

#PEOF2019 & #PatientEngagement
trended in Belgium for two days

Patient Engagement Open Forum highlights video

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pictures from
the event

Presentations from sessions

During the Patient Engagement Open Forum, participants had the option to deep dive into ongoing patient engagement work conducted by many 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. Below you can find the presentations of the plenary sessions and workshops.

From the Idea
to 200.000 Patients

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Patient engagement – How to reach beyond the easy targets?

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Learning from good practices and applying to your everyday work

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Fair Market Value of Engaging Patients

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Legal Agreements between Patients, Patient Advocates and Pharma

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Metrics to determine the shared value of patient engagement

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Identifying and understanding gaps in practice and process of patient engagement

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Creating future
patient engagement
tools

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How to engage patients in early development and preclinical phases of medicines development

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How to engage
patients in clinical
trial phases

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The role of patients in co-designing Plain Language Summaries

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2019 Agenda

Day 1

 9:00

Registration to PARADIGM’s General Assembly for consortium partners (closed event)

Room: Plenary room

10:00

PARADIGM’s General Assembly for PARADIGM consortium partners only (closed event) – Agenda

12:00

Registration Patient Engagement Open Forum / Lunch

Room: Lobby

13:00

Welcome and Official Opening of the Patient Engagement Open Forum

Magda Chlebus (EFPIA) – PARADIGM
Matthew May (EPF) – EUPATI
Nicholas Brooke (The Synergist) – PFMD
Room: Plenary room

13:30

Panel with National and EU HTA and Regulators
Nathalie Bere – EMA
Daniel O’Connor – MHRA
Sandra Garcia Armesto – IACS
Sabine Ettinger – LBI-HTA
Nicola Bedlington (chair) – EPF

Room: Plenary room

14:30

4 Parallel interactive sessions

  • Session 1: Learning from good patient engagement practices and applying to your everyday work​
    Room: Plenary room
  • Session 2: Legal contracts between Patients, pharma and researchers – where are we and what is missing?
    Room: Creativity- breakout room
  • Session 3: PART 1: Understanding and prioritising gaps in patient engagement practices and processes
    Room: Klimt – breakout room
  • Session 4: Patient Engagement is everybody’s responsibility. How to reach beyond the easy targets? (online session)

16:30

Coffee break

17:00

Capturing takeaway messages from the day – Tamás Bereczky (EUPATI)

Room: Plenary room

18:00

End of Day 1 – Reception with drinks and finger food – Mingle, share your holiday experience, network, work, discuss, and have fun

Room: Lobby

Day 2

8:45

Arrival time

Room: Lobby

9:15

3 Parallel interactive sessions

  • Session 5: Toolkit for compensating patients and patient groups for their expert input
    Room: Klimt – breakout room

  • Session 6: Metrics to determine the shared value of patient engagement
    Room: Plenary room

  • Session 7: PART 2: Creating future patient engagement tools​
    Room: Creativity- breakout room

11:15

Coffee break

Room: Lobby

11:45

Guest Speaker: Maya Zlatanova – FindMeCure

Room: Plenary room

12:15

Capturing takeaway messages from the morning – Mathieu Boudes (EPF) – PARADIGM

Room: Plenary room

12:45

Lunch

Room: Lobby

14:00

Building a global patient engagement framework – Nicola Bedlington (EPF), Nicholas Brooke (The Synergist), Daniel de Schryver (Janssen)

Room: Plenary room

15:00

3 Parallel co-creation workshops: 
(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). 

  • Workshop 1 – How to engage patients in early development and preclinical research phases of medicines development
    Room: Klimt – breakout room
  • Workshop 2 – How to engage patients in the clinical trial phases
    Room: Plenary room
  • Workshop 3 – The role of patients in co-designing plain language summaries to maximise the impact and understanding of research result
    Room: Creativity- breakout room

17:00

End of Patient Engagement Open Forum – Farewell drinks

Room: Plenary room

SESSION 1: LEARNING FROM GOOD PATIENT ENGAGEMENT PRACTICES AND APPLYING TO YOUR 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. 

Click to see the full session description

SESSION 2: LEGAL CONTRACTS BETWEEN PATIENTS, PHARMA AND RESEARCHERS - WHERE ARE WE AND WHAT IS MISSING?

Legal agreements for collaboration between pharmaceutical industry and patients and patient organisations has historically been experienced as problematic one-sided by the patient community for multiple reasons. In order to create the conditions for increasing collaborations, this legal barrier is addressed across the Atlantic by several collaborating organisations and multistakeholder partnerships.

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SESSION 3: PART 1 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.

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SESSION 4: 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.

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SESSION 5: 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.

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SESSION 6: 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 to the participants some practical examples of determined value of patient engagement.

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

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SESSION 7: PART 2 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 collaboratively have 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 .

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WORKSHOP 1 - HOW TO ENGAGE PATIENTS IN EARLY DEVELOPMENT AND PRECLINICAL RESEARCH PHASES OF MEDICINES DEVELOPMENT

Together this Working Group from PFMD has developed a model which encompasses elements that we feel are the key components in collaborating and co-creating with patients to develop a thorough understanding of all aspects of disease experience, patient preference, unmet need and benefit/risk that will ensure the development of a more relevant, robust and acceptable plan leading into the clinical development phase.

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WORKSHOP 2 - HOW TO ENGAGE PATIENTS IN THE CLINICAL TRIAL PHASES

This workshop focuses on two specific activities in the clinical trial phases where patients can be involved in the process. By attending this workshop, you will be able to participate in the co-creation of how-to guides on the following topics:
1) how to best engage patients in the clinical trial protocol development, or
2) how to best engage patients in the selection, development and interpretation of clinical outcome assessment (COA) instruments.

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WORKSHOP 3 - THE ROLE OF PATIENTS IN CO-DESIGNING PLAIN LANGUAGE SUMMARIES TO MAXIMISE THE IMPACT AND UNDERSTANDING OF RESEARCH RESULTS

There is a growing need and expectation for plain-language versions of research results that are accessible to patients and the public. This expectation does not come only from the patient community - the new European regulation for Clinical Trials ( that will come into effect in 2020 will make lay summaries of clinical trial results mandatory at the end of any research initiative. However, there is a wealth of other research results, disseminated in medical publications and congress presentations, that falls outside the remit of the EU-mandated clinical trial lay summaries.

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Building a global patient engagement framework

In the fast-paced environment, patient engagement is at a turning point and in the last two days, over 250 people have shared their progress, challenges and ideas to turn patient engagement into a systematic practice for all the stakeholders. Nicola Bedlington, Daniel De Schryver and Nicholas Brooke will take us through the learnings from the two days followed by the next steps.