Patient Engagement
Open Forum

The Patient Engagement Open Forum 2020 went virtual with a series of virtual events from June 25 until the end of November, 2020.

Check out the session resources 

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About the Forum

PARADIGM, PFMD and EUPATI welcome you to the Patient Engagement Open forum – a series of virtual events where we will work together, in a multi-stakeholder context, to turn patient engagement into reality.

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.

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.

2020 Agenda

All virtual sessions will start at 15:00 CET/ 9:00 EST and last for a maximum of 2h.

June 25th

PEOF2020 opening plenary (by co-organisers PARADIGM, PFMD and EUPATI) 

Parallel sessions:

  • Session A: Patient Engagement tools session #1 (public consultation)​ 
  • Session B: Patient engagement and medical devices (panel discussion)
  • Session C: Patient experience data in regulatory processes (workshop) 

June 26th

Parallel sessions:

  • Session A: How to engage patients in the early stages? (workshop)​ 
  • Session B: Plain Language Summaries (PLS) of peer-reviewed publications: how-to involve the patients in the co-creation process (workshop)​ 
  • Session C: National Health Council Patient Engagement Fair-Market Value Calculator Toolbox​ 

July 9th

Parallel sessions:

  • Session A: Patient Engagement tools session #2 (public consultation)​ 
  • Session B: Flash presentations​ 
    1. Sustainability roadmap for the patient engagement ecosystem 
    2. Patient engagement agreements explained
    3. Patient engagement in medicines R&D in the CEE region
  • Session C: Motherhood should not be a fight – better safety information on medicines use during pregnancy and breastfeeding, with patients for patients. (workshop)

September 10th

  • Session: PARADIGM Patient Engagement Toolbox & Patient Engagement Monitoring and Evaluation Framework

September 24th

Parallel sessions:

  • Session A: Involving patients in COA strategy and development: building relationships with patients for a meaningful engagement 
  • Session B: From diagnosis to treatment and beyond: personalized medicine – what’s in it for patients and understanding patient needs to make it a reality? 
  • Session C: How Patient Engagement Can Foster Access Through Improved Affordability? 

October 15th

Parallel sessions:

  • Session A: Patient Engagement and Quality by Design: Co-Developing an Implementation Roadmap for Clinical Trials 
  • Session B: Good Lay Summary Practice, communicating trial results to the general public – How patient engagement can work  

November 5th

  • Session: Global patient engagement across regional regulatory boundaries 

November 23rd

  • Plenary session: Moving towards the integration 3 years of progress 

Why you should attend

Get an in-depth overview of the impactful collaborative work streams in the patient engagement ecosystem and network with professionals from 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.

Highlights of the programme:

Presentations of ongoing patient engagement projects around the world

Interactive sessions where you will get to be involved in the co-creation of the tools shaping the future of patient engagement

Access to resources available now and receive an update about the upcoming tools

About us

The PE Open Forum is jointly organised by PFMD, EUPATI and PARADIGM

A public-private collaboration for better patient engagement co-led by the European Patients’ Forum (EPF) and the European Federation of Pharmaceutical Industries and Associations (EFPIA) and funded by the Innovative Medicines Initiative. It aims to participate to the co-creation of a sustainable framework allowing systematic, meaningful and ethical patient engagement in medicines development. Strong of 34 partners, from patient organisations to pharmaceutical companies, regulators and academic, the project started in March 2018 and will end in August 2020.

+Find out more

Patient Focused Medicines Development (PFMD) was established in October 2015 as an open, independent global coalition of health stakeholders.

PFMD aims to transform the way in which we understand, engage, and partner with patients globally in the design and conducting of research and development of medicines by focusing on unmet patient needs. We are bringing together relevant experts and synergizing disparate but complementary efforts that integrate the voice of the PATIENT across the lifecycle of medicine.

PFMD is driving the culture change and co-producing tools needed to make systematic patient engagement happen. 

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The European Patients’ Academy (EUPATI) is a pan-European programme implemented as a public-private partnership by a collaborative multi-stakeholder consortium from the pharmaceutical industry, academia, not-for-profit, and patient organisations. The Academy was started, developed and implemented as a flagship project of the Innovative Medicines Initiative, and continues to be led by the European Patients’ Forum.

EUPATI supports patient engagement in medicines development by providing education and training to patients, industry, and other stakeholders through e-learning, face-to-face training, 19 national platforms, and an online Toolbox currently used by more than 1.9 million people.

+Find out more

Moving towards the integration 3 years of progress

November 5th, 2020, 15h (Brussels time) / 9am (US East time)

The Patient Engagement Open Forum 2020 is the 3rd event of this kind, co-powered by PARADIGM, EUPATI and PFMD . It started in 2018, small, yet with the ambition 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.

In 2018, less than 100 people attended the event in person in Brussels, last year this number doubled! This year, more than 1500 people registered for this online edition!

Access the resources of this session here:

Global patient engagement across regional regulatory boundaries

November 5th, 2020, 15h (Brussels time) / 9am (US East time)

This session focuses on shedding some light to the science of patient input and patient engagement from the regulatory perspective.

Access the resources of this session here:

Good Lay Summary Practice, communicating trial results to the general public – How patient engagement can work

October 15th, 2020, 15h (Brussels time) / 9am (US East time)

The upcoming Clinical Trial Regulation EU No 536/2014, to be implemented beginning of 2022, requires the development and dissemination of Lay Summaries of clinical study results from commercial and non-commercial sponsors.

The full description of the session

Pre-reads

Access the resources of the session here: recording and presentation

 

Patient Engagement and Quality by Design: Co-Developing an Implementation Roadmap for Clinical Trials

October 15th, 2020, 15h (Brussels time) / 9am (US East time)

Global regulatory frameworks increasingly emphasize the need for patient input into study design. Despite the wealth of patient engagement resources available, however, there is currently no harmonized roadmap for effective and efficient implementation to specifically support the key decisions in clinical trial design. As patient engagement has evolved, there are also new opportunities for engagement that may not be represented in existing models.

The full description of the session

Access the resources of this session here: recording and presentation

How Patient Engagement Can Foster Access Through Improved Affordability?

September 24th, 2020, 15h (Brussels time) / 9am (US East time)

While the core objectives of EUPATI do not include health policy-related issues or trends, there is a clear demand from patient communities and public sustaining partners to gain a better understanding of the pricing mechanisms of medicines and diagnostics, and the underlying systems and regulations (e.g. intellectual property regulations, patents, global trade agreements, reference pricing etc.). These questions dominate the discourse of patient communities. It is also clear, however, that the access to and affordability of medicines encompass a much broader field of knowledge than just the price, or even the distinction between price, cost, and value.

From diagnosis to treatment and beyond:
personalized medicine – what’s in it for patients and understanding patient needs to make it a reality?

September 24th, 2020, 15h (Brussels time) / 9am (US East time)

Personalized Medicine (PM) has the potential to transform lives, but its benefits have not yet been fully realised. Today, the personalized and precision medicine landscape is rapidly changing and fragmented. Efforts to expand it are piecemeal and disconnected, making it difficult to identify best practices and preventing effective uptake. Lack of standardization in basic testing on national and global levels is a challenge.

Involving patients in COA strategy and development: building relationships with patients for a meaningful engagement

September 24th, 2020, 15h (Brussels time) / 9am (US East time)

Including patients in the selection and development of Clinical Outcome Assessments (COAs): an area of clinical development where the patient perspective is becoming more and more relevant. Clinical Outcome Assessments (COAs) is an essential component of clinical trials to collect patient (caregiver, clinician) perspective on treatment benefits and risks.

PARADIGM Patient Engagement Toolbox
&
Patient Engagement Monitoring and Evaluation Framework

September 10th, 2020, 15h (Brussels time) / 9am (US East time)

This session is organised by the PARADIGM project, an IMI-funded project that developed resources to make patient engagement easier. All this useful material is organised and freely available in the PARADIGM Patient Engagement Toolbox, including the Patient Engagement Monitoring and Evaluation Framework.

Pre-reads
Read the full description of the session

Access the resources of this session here:
  1. PEOF 2020 - PARADIGM Patient Engagement Toolbox on September 10
  2. PEOF 2020 - Panel discussion about the Patient Engagement Monitoring and Evaluation Framework
  3. PEOF 2020 - Patient Engagement Monitoring and Evaluation Framework with metrics on September 10th

Link to the presentation.

Motherhood should not be a fight

Better safety information on medicines use during pregnancy and breastfeeding, with patients for patients (IMI ConcePTION)

Click to see the full session description

Access the resources of this session here: recording and presentation.

Flash sessions

This online session is a great opportunity to address diverse but so important topic when it comes to Patient Engagement in medicines R&D. It will be done with short and interactive presentations (maximum 30 – 45 minutes).

  • Sustainability roadmap for the patient engagement ecosystem
  • Patient engagement agreements explained
  • Patient engagement in medicines R&D in the CEE region

Click to see the full session description

Access the resources of this session here: recording and presentation.

Patient Engagement tools session #2 (public consultation)

The PEOF2020 takes place whilst the public consultation on the tools produced by PARADIGM is still underway. The session will present three patient engagement tools:

  • Community Advisory Board – Guidance document and templates
  • Enhancement of the EUPATI industry guidance
  • Code of Conduct for all stakeholders in patient engagement activities

The key aim of the session is to improve the tools’ usability and practicality for the patient engagement community, using participant feedback.

Click to see the full session description

Access the resources of this session here: recording and presentation.

National Health Council
Patient Engagement Fair-Market Value Calculator Toolbox

To ensure that all stakeholders confidently enter into ongoing, compliant, and sustainable engagement efforts that effectively drive health care innovation based on patient and caregiver insights, the NHC has created a toolbox to support sponsor-patient engagement. These tools include a publicly accessible, online fair-market value calculator, patient-friendly contract templates, compensation and contracting principles for engaging with patients, and other tools.

These tools will be launched on the NHC website at the end of June 2020.

Click to see the full session description

Access the resources of this session here: recording and presentation.

Plain Language Summaries (PLS) of peer-reviewed publications: how-to involve the patients in the co-creation process

Patients can only fully engage if they are well-informed about current medical developments. Therefore, providing access to Plain Language Summaries (PLS) of peer-reviewed publications is at the core of patient participation and involvement. Also, for Health Care Practitioners (HCPs), PLS can help generate dialogue and focus communication with the patients.

Patient engagement in the development of plain language summary is often restricted to later stages (ex. review process) of PLS development. A PFMD working group (WG) has developed a practical how-to-module guidance that describes the process of Plain Language Summary creation and dissemination through a straight-forward 5-step approach to ensure early patient involvement.

Click to see the full session description

Access the resources of this session here: recording and presentation.

How to engage patients in the early stages

Join us in this workshop where we will present the practical how-to guide co-created by a multi-stakeholder group to help stakeholders engage with patients in the early research stages. The very first “prototype” of this how-to was presented in the previous PEOF (in September 2019) to gather first thoughts and ideas to include in the final guide.

This how-to guide has been structured in a way that it can be used as a tool that will guide you through the planning, preparation and organisation of patient engagement activities and setting up meaningful and long term partnerships.

Click to see the full session description

Access the resources of this session here: recording and presentation.

Patient Engagement tools session #1

The PEOF2020 takes place whilst the public consultation on the tools produced by PARADIGM is still underway. The session will present three patient engagement tools, two of which will include case study examples, to support the last iterative round of their development.

The key aim of the session is to improve the tools’ usability and practicality for the patient engagement community, using participant feedback.

Click to see the full session description

Access the resources of this session here: recording and presentation.

Patient Engagement & Medical Devices

The European Patients’ Academy mainly focuses on training on medicines research and development. EUPATI is also aware that there are other areas of medical products that patients and patient representatives can be meaningfully involved. A dialogue meeting between EUPATI and MedTech Europe happened in June 2019 to understand the landscape and patient engagement possibilities in medical technologies.

As a follow up of this meeting, EUPATI is currently developing educational material to ensure that the patient community understands the current landscape of the regulation of medical technologies in the EU, as well as their role in medical technologies development and market access.

Click to see the full session description

Access the resources of this session here: recording and presentation.

Patient Experience Data in Regulatory Processes

Informing stakeholder-regulator communication toward medical product development.

Objectives:

  • Learn more about ongoing patient engagement efforts to inform regulatory decision making
  • Explore challenges and emerging good practices around the use of patient experience data in regulatory submissions
  • Prioritize Patient Experience Data (PED) challenges and emerging good practices in regulatory communication
  • Understand what areas can help move the needle internally for organizations and externally in collaboration with patient organizations, biopharma and regulators

Click to see the full session description

Access the recording resources of this session.