15-16 Nov

Elevating All Patient Voices in the European Health Union

Patient Advocacy Summit 2022 

16 – 17 November 2022

November 16, 2022: AFTERNOON SESSION 

 12.30 – 13.00   Welcome coffee & Registrations

  • FH will welcome and seat participants.

13.00 – 13.10    Welcome & Introduction

Gary Surmay, Senior Director, Corporate Affairs, Pfizer

  • Gary will explain the mechanics of the Patient Advocacy Summit, including the outcomes we hope to achieve, before introducing FleishmanHillard as the facilitator of the session.
  • Gary will recap the outcomes of previous Summits, and the feedback gathered from patient organisations from past sessions.
  • Gary will give the floor to the first panelist, Donata Meroni, Head of Unit on Health Promotion, DG SANTE, European Commission.

13.10 – 13.30    Inspirational Keynote 1: Patient empowerment is at the core of the European Health Union

Donata Meroni, Head of Unit on Health Promotion in DG SANTE, European Commission

  • Donata will present the role of PAGs in the newly established European Health Union and explain why the patient voice is essential in health policymaking post COVID-19 pandemic.
  • Donata will highlight upcoming opportunities for PAG involvement and present how both the Commission and PAGs can work together to develop meaningful and impactful policy.  

13.30 – 14.10   Patient perspectives: How has EASO empowered the obesity patient voice towards EU policymakers?

Jacqueline Bowman- Busato, EU Policy Lead, European Association for the Study of Obesity (EASO)

  • Using its advocacy achievements as a real-life case study, including the Joint Research Centre’s recognition of obesity as a chronic disease, and the WHO’s ICD-11 update, Jacqueline will present how EASO has built a successful advocacy strategy and narrative towards EU and global policymakers.
  • She will reflect on recent health initiatives (EU NCD Initiative, European Health Data Space) and advise attendees on how they can ensure their impactful implementation to the benefit and empowerment of the patient, highlighting what’s next in EASO’s journey.
  • Jacqueline will share three key-takeaways for building a successful advocacy strategy and narrative that can be implemented across disease areas.
  • Jacqueline will engage with the audience through a Q&A session.

14.10 – 14.20   Coffee Break

14.20 – 14.50   Patients Perspectives: The building blocks of a European advocacy plan

Vicki Mooney, Executive Director, European Coalition for People living with Obesity (ECPO)

  • Using its advocacy achievements as a real-life case study, Vicki will explain how ECPO has built a European-wide advocacy program aimed at increasing access to quality and affordable healthcare across Europe for obesity patients.
  • Vicki will emphasize the need for engagement to be conducted at both an EU and national level in order to achieve advocacy goals, explaining how approaches should differ depending on country priorities. She will highlight differences in access to treatment in various EU countries and the role of the patient voice in achieving equality.
  • Vicki will share three key-takeaways for building a successful pan-European advocacy program that can be implemented across disease areas.
  • Vicki will engage with the audience through a Q&A session.

14.50 – 15.30   Advocacy Toolbox Part 1: Your blueprint public affairs plan

Emma Cracknell, Head of Healthcare, Senior Vice President & Director, FleishmanHillard Brussels

  • Emma will take the audience through the blueprint of a successful public affairs plan, including identifying objectives, audience identification, key messages and channels and tactics.
  • This plan will also include practical information including how to identify who to contact in MEP offices and how to find and identify opportunities to comment on policy.
  • Using a blueprint template, Emma will fill in the individual sections of the plan with the audience using the interactive tool Mentimeter. Within each section, she will provide further background information on how to make advocacy plans a success, while highlighting the need to tailor messaging and tactics depending on disease area and policymaker priorities.
  • Participants will be given a template and guide at the end of the session, to complete their own advocacy plans.
  1. – 15.45   Coffee Break
PART 2 : Building a narrative for impactful disease awareness strategies towards European policymakers 

15.45 – 16:05   Inspirational Keynote 2: Integrating the patient voice into the EU policymaking

MEP Véronique Trillet-Lenoir, Renew Europe, France, European Parliament

  • As the European Parliament’s Rapporteur for the EU’s public health strategy post-COVID-19 resolution, MEP Trillet-Lenoir will provide an inspirational keynote on upcoming health policy priorities.
  • MEP Trillet-Lenoir will provide an overview of how PAGs can work with the European Parliament to ensure policy reflects the needs of Europe’s patients.

16.05 – 16.35   Patients Perspectives: Tools and tactics to elevate migraine on the EU health policy agenda

 Elena Ruiz de la Torre, European Migraine and Headache Alliance

  • Elena will explain the importance for migraine, a non-priority therapy area, to be elevated on policymakers’ political agenda.
  • Elena will present EMHA’s latest campaign on social media: #GetImpatientForMigraine, and emphasize the role of social media in sharing key messages with policymakers.
  • Elena will share EMHA’s call to action to policymakers and recommendations for PAGs working in non-priority areas to elevate their voices in Brussels.
    • * Unmeet needs when accessing to innovative and appropriated therapies.

16.35 – 17.15   Advocacy Toolbox Part 2: Building an impactful narrative   

David Turier, Head of Integrated Communications and Reputation Management, FleishmanHillard Brussels

  • Referring to the public affairs blueprint presented in the morning session, David will focus on how to create impactful messages towards policymakers.
  • David will take the audience through a ‘messaging house’, and using a simulation exercise, will work with the group to build messaging together.
  • Participants will leave with their own template to create impactful messaging within their organizations.

17.15 – 17.30   Recapping Day one & Closing Statement

Gary Surmay, Senior Director, Corporate Affairs, Pfizer

  • Gary will summarize the key messages of the Patients Advocacy Summit first session and introduce the theme of Session 2, occurring the next morning.

November 17, 2022: MORNING SESSION

PART 1 :  Tools to participate in EU legislative initiatives

08.30 – 09.00    Welcome coffee & Registrations

  • FH will welcome and seat participants.

09.00 – 09.10    Welcome & Introduction

Gary Surmay, Senior Director, Corporate Affairs, Pfizer

  • Gary will welcome participants and highlight the key themes of the Summit’s second session.

09.10 – 09.40   Advocacy Toolbox Part 2: Using social media to achieve advocacy goals

Cloe Roycroft, Vice President, Head of Social and Digital, FleishmanHillard Brussels

  • Building on the public affairs blueprint and messaging sessions, Cloe will explain why the use of social media is increasingly important to successful public affairs tactics.
  • Cloe will provide examples of best practice social media use in EU advocacy and provide tips and tricks to organizations planning to implement their own strategies.
  • Cloe will engage in an interactive Q&A session with the audience.

09.40 – 10.20   Fire Side Chat: Tactics to elevate non-prioritized disease areas on the EU health agenda

Orla Gavin, Chief Executive Officer, European Federation of Neurological Associations

Fred Destrebecq, Executive Officer, European Brain Council

Nigel Olisa, President, GAMIAN-Europe

  • In the form of a panel discussion, panelists will highlight some of their most impactful advocacy tactics, including media, social media, position papers, organization of events or the building of coalitions.
  • They will discuss the way their advocacy strategies have evolved since the launch of the European Union, and the type of skills needed to make a difference in health policymaking.
  • Panelists will also focus on EU legislative processes, and each highlight one of their successes in this respect.

10.20 – 10.50    Case-study: Participating in EU legislative processes to elevate stroke patients’ voice    

Arlene Wilkie, Director General, Stroke Alliance Europe (SAFE)

  • Using the NCD initiative as an example, Arlene will provide an overview of how SAFE effectively participates in EU legislative initiatives.
  • Arlene will provide key takeaways and tactics for groups seeking active involvement and share her vision for how the European Health Union can improve accessibility of involvement opportunities.
  • Arlene will engage with the audience through a Q&A session

10.50 – 11.00   Coffee Break

PART 2 : Contributing to legislative processes: deep-dive into EU-wide HTA 

11.00 – 11.20    Inspirational Keynote 3: Implementing the EU-wide HTA, what’s next for patient groups?  

Flora Giorgio, Team Leader on HTA| B6 Unit, DG SANTE, European Commission

  • Flora will recap the significant of the EU-wide HTA initiative for access to medicines in Europe.
  • Flora will provide an update on the implementation of the EU-wide HTA and provide an overview of what the stakeholder guidelines mean for patient advocacy groups looking to participate.

11.20 – 11.50    Advocacy Toolbox Part 4: Getting your organization ready for EU-wide HTA

Anne Willemsen, Senior Project Manager, EUnetHTA

  • Anne will provide a recap on EUnetHTA’s work
  • Anne will reflect on the European Commission’s stakeholder guidance and EUnetHTA’s position on impact on patient involvement
  • Anne will provide practical tips on how and when patients can be involved in the new EU-wide HTA process.
  • Anne will engage with the audience through a Q&A session.

11.50 – 12.20    Patient Perspectives: What should meaningful patient involvement look like in the EU-wide HTA?

Valentina Strammellio, Head of Programmes, European Patients Forum (EPF)

  • Valentina will remind participants of the importance of the patient voice in HTA.
  • Valentina will present the preliminary findings of EPF’s survey ‘360° HTA Involvement survey’ and some of the key barriers to PAG involvement in HTA found in the results. She will provide concrete tips on how to overcome them.
  • Valentina will engage with the audience through a Q&A session.

12.20 – 12.30   Recapping Day Two & Closing Statement

Gary Surmay, Senior Director, Corporate Affairs, Pfizer

  • FH will lead an interactive audience survey to gather feedback from the Summit and ask for requests on what organizations need for future trainings.
  • Gary will summarize the key messages of the Summit and conclude.

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