Allergy and Respiratory Patients Digital Conference

Patient-centred care through innovation and digitalisation
23 - 24 October 2020

Thank you very much for attending EFA’s Allergy and Respiratory Patients’ Digital Conference on the 23-24 October 2020!



On the first day of the Conference, we hope you gained deeper insight into how digitalisation and innovationcan improve health services across Europe and empower allergy and respiratory patients in managing their care.

On the second day of the Conference, we hope the trainings and workshops provided new digital health literacy skills and a greater understanding of the global challenges facing allergy and respiratory patient communities.

Want to revisit the sessions? You can access the PowerPoint presentations and the session recordings below.    

Session I: Precision medicine evolution – How do allergy and respiratory patients benefit from it?

Session II: Digitalisation in healthcare settings – how does it improve patient experience?

Session III: Patients and digital health: How to make it a win-win game?

Programme

The Allergy and Respiratory Patients’ Digital Conference 2020 will explore how digital tools and innovation can empower allergy and respiratory patients to be in control of their healthcare. Join us to hear from keynote speakers, and take part in interactive workshops to learn new skills in digital health literacy.

Rationale

The world is undergoing a digital transition that is changing our societies and economies at an extraordinary speed. The pandemic crisis has accelerated this evolution. Especially for the health sector, the COVID-19 pandemic showed the importance of implementing and providing digital servicesand digital solutions that work for patients, including eHealth, telemedicine, contact-tracing apps.

Digitalisation has the enormous potential to improve the health services and patients’ self-management. It can shift from a disease-centred to patient-centred healthcare. But digitalisation also presents challenges in terms of regulations, policy framework and access to digital tools.

This two-days event aims at empowering Patient Organizations, through the presentation of the latest innovations in research and care. EFA believes is crucial to increase digital health literacy, in a context were the allergy and respiratory communities might be challenged by the new global, fast-changing scenario.


Friday, 23 October

Conference
 open to the public (FREE)

The conference will be broadcasted from Brussels, connecting experts and patients all over Europe.


  • Aim of the session

    Introduce the event and the main topic Address the following questions:

    • How digitalisation evolved during the COVID pandemic?
    • How this evolution impacted patients’ lives and what does it mean for patients future?
    Speaker: Mikaela Odemyr, EFA President
    Speaker: Prof Anita K Simonds MD FRCP FERS, President European Respiratory Society (ERS) 2020-2021


  • The evolution of precision medicine towards better diagnostics, treatments and prevention – How do allergy and respiratory patients benefit from it?

    • Understanding how disrupted biological processes cause disease at a molecular level – Identification of biomarkers.
    • What do we know about the role of the microbiome in respiratory and allergy medicine?
    • Incorporating the human exposome into precision medicine: a powerful approach for evaluating environmental exposures and their influences in human disease.
    Moderator: Tamsin Rose, Director, Tamarack SPRL and Senior Fellow at 'Friends of Europe', a Brussels based Think Tank

    Speaker:
    Prof. Graham Roberts, Professor and Consultant, Paediatric Allergy and Respiratory Medicine, University of Southampton.
    Speaker: Prof. Marek Jutel, President, European Academy of Allergy and Clinical Immunology.
    Speaker: Dr. Oriol Sibila, Head of Section, Respiratory Department, Hospital Clinic Barcelona.
    Speaker: Prof. Liam O’Mahony, Professor of Immunology, Departments of Medicine and Microbiology, University College Cork.
    Speaker: Dr. Sophie Lanone, Research Director, French National Institute of Health and Medical Research (Inserm); Coordinator, EU funded REMEDIA project.

    Q&A with the audience

    Aim of the session
    • What do these innovations mean for patients?
    • How can these innovations be applied in clinical practice?
    • How can patients’ involvement improve these research outcomes?

  • Moderator: Tamsin Rose, Director, Tamarack SPRL and Senior Fellow at 'Friends of Europe', a Brussels based Think Tank

    Speaker: Jörgen Warberg, Vice president, Swedish Heart and Lung Association.
    Speaker: Dr. Omar Usmani, Reader in Respiratory Medicine and Consultant Physician, Imperial College London.
    SpeakerDr. Alberto Alvarez-Perea, Paediatric Allergist, Hospital General Universitario Gregorio Marañón, Madrid; IT group Coordinator, Spanish Society of Allergy and Clinical Immunology. 
    SpeakerDr. Anna Odone, Associate Professor of Public Health, University Vita-Salute San Raffaele, Milan; President, Digital Health Section, European Public Health Association (EUPHA).
    Speaker: Karoline Kristensen, Directorate-General for Health and Food Safety, European Commission

    Q&A with the audience

    Aim of the session
    • How can digitalisation in healthcare settings improve patient experience?
    • How can digital health technologies be integrated successfully in health systems and what does it mean for patients?
    • Opportunities and challenges of digital health for patients, from an ethical perspective

      • Examples and best practices of initiatives and projects aiming at making patients comfortable and safe in sharing their health data.
      Moderator: Tamsin Rose, Director, Tamarack SPRL and Senior Fellow at 'Friends of Europe', a Brussels based Think Tank

      Speaker
      Nicola Bedlington, Previous Secretary General - Special Adviser of European Patients Forum (EPF).

      Speaker:
       Mirko De Maldè, COO at Lynkeus, coordinator of My Health my Data.

      SpeakerAnder Elustondo Jauregui, Policy Officer, Digital Health, European Reference Networks, Directorate-General for Health and Food Safety, European Commission.
      Speaker: Dr. Peter Arlett, Head Data Analytics and Methodology, European Medicines Agency (EMA).

      Q&A with the audience

      Aim of the session
      • What are the opportunities and challenges of digital health for patients, from an ethical perspective?

    Programme

    Saturday, 24 October, 10h30 - 15h15
    Trainings and Workshops for patients and carers (Free)


    The Allergy and Respiratory Patients Conference will be broadcasted from Brussels, connecting experts and patients all over Europe.

    • Speaker: Susanna Palkonen, EFA Director
      • Identify the needs of patients in the digital environment.
      • How to fully participate at medical care through digital tools?

      Aim of the session
      • How to become a digital, empowered and engaged patient?
      Speaker: Desislava Ekzarova, Membership and Governance Officer, European Patients Forum (EPF)
      Speaker: Ed Moss, Creative Producer, Facilitator and Trainer, Bridging the Gap
      • What services should be provided? 
      • What platform should be used? 
      • Members Best Practices: Challenges and Opportunities, experience during the COVID time.

      Aim of the session
      • How to become fully operational in digital settings? 
      Speaker: Dominque Hamerlijnck, Patient
      Speaker: Anca Petre, Digital Health and Blockchain consultant
      • Getting familiar with the GDPR regulation and the implication for health data.
      • Members’ stories: Challenges and Opportunities.

      Aim of the session
      • How to build confidence on sharing data and using digital app for healthcare, ensuring Privacy protection in data collection, storage and usage?
      • Understand together the meaning of the EU Health Data Space, its potential for patients, and how patients can influence the public debate, to become more empowered.

      Aim of the session
      • Identify the Patients Priorities to be addressed in the upcoming consultation on EU Health dataspace
      Moderator: Tamsin Rose, Director, Tamarack SPRL and Senior Fellow at 'Friends of Europe', a Brussels based Think Tank
    • Aim of the session

      • Understand, identify and prioritise together the benefit of digitalisation in prevention, care and management of allergy, asthma and COPD patients. 
      Moderator: Tamsin Rose, Director, Tamarack SPRL and Senior Fellow at 'Friends of Europe', a Brussels based Think Tank
    • Aim of the session

      • Understand, identify and prioritise together the benefit of digitalisation in prevention, care and management of allergy, asthma and COPD patients. 

    Speakers

    Ander Elustondo Jauregui


    Policy Officer
    Digital Health, European Reference Networks, Directorate-General for Health and Food Safety, European Commission.

    Anna Odone


    Full Professor of Public Health
    University of Pavia, Italy

    Desislava Ekzarova


    Membership and Governance Officer
    the European Patients’ Forum

    Dr. Alberto Alvarez-Perea


    Paediatric Allergist
    Hospital General Universitario Gregorio Marañón, Madrid; IT group Coordinator, Spanish Society of Allergy and Clinical Immunology.

    Dr. Omar Usmani


    Reader in Respiratory Medicine and Consultant Physician
    Imperial College London

    Dr. Oriol Sibila


    Head of Section in the Respiratory Department
    Hospital Clinical in Barcelona

    Dr. Peter Arlett


    Head Data Analytics and Methodology
    European Medicines Agency (EMA).

    Dr. Sophie Lanone


    Research Director
    French National Institute of Health and Medical Research (Inserm); Coordinator, EU funded REMEDIA project.

    Jörgen Warberg


    Vice President
    The Swedish Heart and Lung Association

    Karoline Kristensen


    Directorate-General for Health and Food Safety
    European Commission

    Mirko De Maldè


    Co-chair
    INATBA's Healthcare Working Group

    Nicola Bedlington


    Special Adviser and Previous Secretary General
    European Patients Forum (EPF)

    Prof. Graham Roberts


    Prof. and Honorary Consultant Paediatrician in Paediatric Allergy and Respiratory Medicine within Medicine
    University of Southampton

    Prof. Liam O’Mahony


    Professor of Immunology
    Departments of Medicine and Microbiology, University College Cork

    Prof. Marek Jutel


    President
    EAACI, the European Academy of Allergy and Immunological Disease.