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GlobalSkin at the 2022 EADV Congress

 The European Academy of Dermatology and Venereology (EADV) Congress 2019 in Madrid was the fifth Congress that GlobalSkin Board Directors and senior staff have attended since our inception in 2015. GlobalSkin’s objective during the EADV Congress is to connect with stakeholders and bring attention to the work we and our Member organizations undertake to improve the lives of patients living with dermatological conditions. Highlights from this year’s Congress include the Joint Special Interest Session with the EADV, the Patient Society Village, GRIDD poster presentation, Industry events, and our Skin Matters Reception.

 Joint Session - EADV Patient Working Group/EADV Psychodermatology Task Force/IADPO

This year’s joint session was entitled “Building the doctor-patient relationship through effective communication”; this is the third consecutive year for a co-organized session between EADV and IADPO. Patient organizations were prominently featured in this multidisciplinary program highlighting the importance of positive and open communications between doctors and patients. The session was co-chaired by Jean-Marie Meurant, past President of the IADPO Board of Directors along with representatives from the EADV Patient Working Group and the EADV Psychodermatology Task Force. Patient organization representatives Snezana Sundic Vardic from Alergija i Ja (Serbia), Dr. Jasmin Barman-Aksözen from Swiss Society for Porphyria, and Antoine Gliksohn from Genespoir (France) presented their personal stories on this topic and emphasised the importance of effective communication, mutual respect, and the need for a supportive approach to dialogue between patients and doctors.

 

Patient Society Village

The Patient Society Village offered GlobalSkin Members the opportunity to directly connect with doctors, healthcare providers and delegates and to demonstrate their support for dermatological patients in Europe and globally.  It allowed for our patient leaders to provide delegates with a better understanding of the needs of dermatology patients.  GlobalSkin coordinated attendance at the Patient Society Village with its European Patient Organization Members and saw 19 Patient Organizations participate this year. By hosting our own booth, GlobalSkin brought awareness to the scope and reach of our global Membership.  We look forward to working with the EADV and patient organizations to continue building this presence next year.

 

The Patient Perspective

The 2019 Congress demonstrated progress on the inclusion of the patient voice and patient organization perspective in its programming.  Not only were patient organization representatives provided with access to attend scientific sessions, but the patient perspective was incorporated into more and more sessions during the Congress.  As noted previously, patient leaders were part of our co-organized joint interest session and other GlobalSkin Members took part in other presentations. Karin Veldman from Vereniging voor Ichthyosis Netwerken (Netherlands) was invited to share her experiences in a scientific session on E-Dermatology, and Joanna Camilo from ADERMAP - Associação Dermatite Atópica Portugal was invited to speak at an industry session on Atopic Eczema, which was moderated by Jennifer Austin, ED of GlobalSkin.

GlobalSkin also co-hosted a session with the European Federation of Allergy and Airways Organizations (EFA) on “How to improve quality of life in atopic eczema beyond the physician consultation”.  This session was recorded and can be viewed here.  Patient organization representatives were also invited to attend a meeting with the EADV Patient Working Group and Nurses Working Group on how to increase the involvement of these key stakeholders in future EADV initiatives.  Positive dialogue like this is helping to move patient organization inclusion forward at the EADV Congress.

The Patient Perspective
The 2019 Congress demonstrated progress on the inclusion of the patient voice and patient organization perspective in its programming. Not only were patient organization representatives provided with access to attend scientific sessions, but the patient perspective was incorporated into more and more sessions during the Congress. As noted previously, patient leaders were part of our co-organized joint interest session and other GlobalSkin Members took part in other presentations. Karin Veldman from Vereniging voor Ichthyosis Netwerken (Netherlands) was invited to share her experiences in a scientific session on E-Dermatology, and Joanna Camilo from ADERMAP - Associação Dermatite Atópica Portugal was invited to speak at an industry session on Atopic Eczema, which was moderated by Jennifer Austin, ED of GlobalSkin.

GlobalSkin also co-hosted a session with the European Federation of Allergy and Airways Organizations (EFA) on “How to improve quality of life in atopic eczema beyond the physician consultation”. This session was recorded and can be viewed here. Patient organization representatives were also invited to attend a meeting with the EADV Patient Working Group and Nurses Working Group on how to increase the involvement of these key stakeholders in future EADV initiatives. Positive dialogue like this is helping to move patient organization inclusion forward at the EADV Congress.
 

GRIDD Oral Presentation

An important milestone for the Global Research on the Impact of Dermatological Diseases project was an oral presentation of the Phase 1 findings during the EADV Congress.  Members of the GRIDD Researcher Team Rachael Pattison, Cardiff University and Nirohshah Suthakharan, University Medical Center Hamburg-Eppendorf presented the e-Poster.  We look forward to next year’s Congress when we anticipate reporting on Phase 2 of this ground-breaking research.   

 

Looking to Future Congress Attendance

In four short years since IADPO’s first attended the EADV Congress, we have seen a more patient-focused approach to programming at the EADV; this movement demonstrates the importance of the patient perspective to this medical society. GlobalSkin has established a positive working relationship with EADV leadership.  We will continue to collaborate on the 2020 EADV Congress Program on another joint session, strive for a further enhanced the patient society village and create more opportunities for patient leaders during the event.

Visit our Flickr Albums to view photos from all events at the EADV including our Skin Matters Reception.  The reception is GlobalSkin’s opportunity to showcase our organization’s successes. We invite stakeholders, Member representatives and delegates from the EADV to informally learn about our GRIDD project and the important work GlobalSkin undertakes on a daily basis to improve the lives of patients living with dermatological conditions.

IADPO Member Organization Contribution

Patient Associate Editors at the British Journal of Dermatology

Patient engagement or patient participation is an important issue. I believe the motto is: “Nothing about us without us.” In his June 2019 editorial for the British Journal of Dermatology (BJD), Professor Alex Anstey gave an overview of patient engagement and how this could be incorporated at the BJD. Time for an update, and it is good news!

Since then, James Burton, representing the Hidradenitis Suppurativa Trust (United Kingdom), and I have been appointed as the two Patient Associate Editors at the BJD, being equal members of the editorial team. As a team, we are trying to shape patient engagement at the BJD by embedding the patient perspective and create and strengthen relations with patients and patients’ organizations.

Research news

The BJD is one of the most esteemed medical journals in Dermatology. Many of its articles come with a plain-language summary (PLS) that contains the essence of these articles. Usually, this means around 15 PLSs per issue. They are all freely accessible on the BJD-site in English and also available in Chinese (Mandarin).

We are now in the process of creating a new web-resource for PLSs on the patient hub website of the British Association of Dermatologists. New features will include filters per disease area or topic and a search function. Furthermore, a PLS mailing list has been set up, and already tweets are sent out with the hashtag #BJDPLS. This way patients and patients’ organizations can keep up to date with the latest research, from a trusted source.

Patient perspectives

We also focus on the patient perspective in the BJD itself, as patient engagement is not a one-way street. Therefore, we very much welcome thought-provoking articles from a patient perspective. Please check the amended author guidelines on the perspective articles in the Correspondence section.

This is all good news, I think. Although it is still work in progress, it is also very exciting. In the meantime, if you have any questions or any thoughts you might want to share, please do not hesitate to contact me.

gridd V1Bernd Arents
This email address is being protected from spambots. You need JavaScript enabled to view it.
Dutch Association for People with Atopic Eczema, The Netherlands

Greetings from New IADPO Board President

It is with great pleasure that I write this letter as the new IADPO Board President.

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