Fostering national and regional networks
Our main goal is to improve the quality of healthcare for patients suffering from chronic inflammatory skin diseases as well as their access to quality skin care. As such, SPIN promotes the development of national and regional networks around a specific disease (eg. psoriasis, atopic dermatitis) and provides assistance in their creation. Here below, you will find some tips on how to create and develop a national network.
Regional networks such as SOLAPSO (Latin American Society of Psoriasis), PsoMaghreb, West-African Psoriasis Group and the Arab Psoriasis Network have also been created in collaboration with SPIN.
HOW TO CREATE A NATIONAL GROUP?
Suggestions made at the SPIN founding meeting, November 18, 2005
A national psoriasis is a task force composed by dermatologists interested in psoriasis, atopic dermatitis or any other chronic inflammatory skin diseases, whether from public or private practice, depending on the country.
The group may also include other healthcare professionals such as rheumatologists, nutritionists, psychiatrists, patient associations, ...
National psoriasis develop various activities, such as clinical or therapeutic studies, national and international surveys, national guidelines, discussion on the good use of treatments, yearly national meetings, information to the patients, experience sharing at the SPIN Congress.
The choice between a more formal or informal structure or type of organisation will largely depend on the legal framework and tradition of each country. Here you can find some examples of how a national group can be set up.
On an informal basis: a group of friends that start up a working group on psoriasis
On a formal basis:
- contact all dermatologists in your country and survey their interest in being part of a work group on psoriasis or atopic dermatitis, for instance
- organise a national meeting to discuss the goals of the group, set up the agenda and schedule the actions to take
- seek some official recognition and/or contact the respective national society of dermatology to form a specific psoriasis work group within its structure.
Please notice that in any case, some form of official recognition is usually useful to obtain proper funding for the envisaged actions.
HOW TO FOSTER THE DEVELOPMENT OF A NATIONAL NETWORK?
You may start your national network by:
- Setting up dedicated outpatient consultations 1 day a week in your department for psoriasis, atopic dermatitis, etc., and support the creation of such consultations in each department of dermatology in your country
- Link at the national level the consultants in charge of these outpatient consultations to form a national network
- Join SPIN
- Organise national meetings to exchange on difficult cases, set up nationwide surveys, guidelines, discuss on clinical and therapeutic research projects
- Provide information and support to local/national patient associations
Example of activities to further develop your national network:
- A website facilitating discussion on difficult cases, clinical or therapeutic research, international collaborations
- National or International surveys to collect knowledge on patient needs, treatments, educational tools...
- National guidelines and discussion on the good use of the treatments to improve the access to quality health care for patients
- Encourage the creation of patient associations and/or provide information and support to them
- Sharing experiences at the SPIN Congress every 3 years
Fostering dedicated psoriasis outpatient consultations
Thematic consultations are of great usefulness. In order to develop specific care as well as therapeutic and clinical and therapeutic research it is necessary to be able to spend some time with each patient. This is nearly impossible in classical polyvalent outpatient clinics. Thus, it seems very useful to organise specific consultations for psoriasis, atopic dermatitis and other chronic inflammatory skin diseases in each department of dermatology.
The patients suffering from this disease and coming to the polyvalent dermatology clinic get an appointment to the next dedicated outpatient consultation. By this way, it is possible to talk with the patients, to fill surveys initiated for clinical and therapeutic research projects, to test new drugs and to develop clinical guidelines.
Here is a useful document for those dermatology departments wanting to create dedicated outpatient consultations.
- PSO 2007: 1013 participants from 65 countries, organised by the French Psoriasis Group
- PSO 2010: 1482 participants from 81 countries, organised by the German Psoriasis Group
- PSO 2013: 1508 participants from 88 countries, organised by Psonet European Psoriasis Registry Network
- PSO 2016: 1213 participants from 81 countries, organised by SOLAPSO Latin American Society of Psoriasis
- SPIN 2019: 25-27 April, 2019 in Cité des Sciences – Paris, organised by the Spanish Psoriasis Group
World Map Directory of Psoriasis Medical Resources
This SPIN website feature is an interactive world map directory based on the survey "World Listing of Psoriasis Medical Resources for Patients".
This ongoing survey will serve to identify the availability of the following services in dermatology departments:
- dedicated outpatient consultations
- interdisciplinary consultations
- available treatments
- therapeutic education
- collaboration with patient associations
How can dermatologists, GPs and patients use this interactive directory?
- Choose a country
- Zoom in and choose a pinned dermatology centre
- For that centre, you will see:
- how to get an appointment
- which specific medical resources are provided to psoriasis patients
- location and contact information
- You can also choose to filter the information by specific medical resources
Surveys & Studies
A main goal of the SPIN is to engage the network in surveys and clinical and therapeutic research programmes.
Up to date, SPIN has carried the following surveys:
- 2011 - Survey on the national organisation of psoriasis-related activities: answers from 50 countries
- 2012 Worldwide Survey on the Use of Methotrexate in the Treatment of Psoriasis (R. Gyulai, Szeged and Pécs Universities): 490 participants from 65 countries ; results published on JEADV
- Ongoing since 2013 - World Listing of Psoriasis Medical Resources for Patients: 330 dermatology centres listed from 67 countries
- 2015 - Therapeutic Patient Education in Psoriasis - a worldwide survey: 262 responses from 71 countries
- Ongoing since 2016 - Current practice of phototherapy in psoriasis: a worldwide survey among dermatologists
Symposia with SPIN KOLs
One of the main tasks of SPIN is to utilise all opportunities to enhance and harmonise dermatology training in clinical and therapeutic research in the field of chronic inflammatory skin diseases, by proposing symposia with SPIN KOLs to selected national and international congresses or at the request of national or regional networks.
So far, SPIN has organised so far the following symposia:
- 3 symposia on "Clinical and Therapeutic Research in Psoriasis, a worldwide challenge":
- 1st Latin American Congress of Psoriasis (Dec. 1, 2012)
- 13th Conference of the Pan-Arab League of Dermatology (Feb 23, 2013)
- 2nd Latin American Congress of Psoriasis (Dec.4, 2014)
In collaboration with the EADV Psoriasis Task Force, SPIN has contributed to the elaboration of the programmes for the following EADV symposia:
- Symposium on "Safety in Psoriasis: the importance of registries" at EADV Congress in Istanbul (Oct 5, 2013)
- Symposium on "Long term treatment safety and efficacy outcome in psoriasis" at EADV Congress in Amsterdam (Oct 11, 2014)
Upcoming SPIN symposia:
- 1st Psoriasis Symposium of the Psoriasis Association of Bosnia and Herzegovina (Oct 14, 2017)
- 2nd Annual Meeting of the Egyptian Society for Psoriasis (Nov. 16, 2017)
Collaboration with patient associations
SPIN encourages the development of patient associations and is available to collaborate with them on any basis they may need. SPIN gathers at present around 43 patient associations worldwide and collaborates with all the major federations of patient organisations, such as IFPA, EUROPSO, LATINAPSO, and PsorAsia.
SPIN also relays information from patient associations around the World Psoriasis Day on October 29th, in order to raise awareness to this serious disease. Likewise, to promote awareness at both national and international level, we share patient associations’ activities, projects and events via our newsletters and "Focus On".
SPIN, as an international organisation, can also provide support to patient associations by helping them in advocacy efforts and awareness campaigns.