Dr. Van Thai Nguyen recently defended his doctoral study “The first study of the treatment outcomes of patients with cleft lip and palate in Central Vietnam” at the University of Tartu. Via the COST projects, he went to many project meetings, conferences, and a scientific mission to gain knowledge in comprehensive care for patients with clefts and scientific research skills. The conferences related to COST included: “The European Cleft and Craniofacial Initiative for Equality in Care (ECCE) Conference”, “An international conference about the impact of appearance in our society”, and “Face value: Optimising the psychosocial care for individuals with visible differences in Europe”.
He received an Inclusiveness Target Countries (ITC) Conference Grant to go the American Cleft Palate-Craniofacial Association (ACPA) Conference in the USA. The conference mentioned that equality care for patients regardless of race, ethnicity, or country of origin was crucial. The goal was to eliminate disparities in health care, especially in cleft care. The goal was in line with ECCE’ goal to provide equality in care in Europe. More studies are needed to understand the current situation of cleft care in Europe, and then investigate the disparities in health care in Europe.
He also received a grant for Short Term Scientific Mission (STSM) to Riga Cleft Lip and Palate Center. The purpose of the trip was to see the workflow of the cleft team in Riga, how cleft service was working and what services were available for cleft patients. He checked the Latvian database of patients with clefts to investigate the possibility to carry out an inter-center comparison in the future.
Link to Dr. Van Thai Nguyen thesis - https://dspace.ut.ee/bitstream/handle/10062/64820/nguyen_thai_van.pdf?sequence=1&isAllowed=y
The European Cleft Palate & Craniofacial Congress
Many members of the COST Action attended the European Cleft Palate & Craniofacial Congress in Utrecht. Throughout the Congress, the COST Action was mentioned and promoted several times. The event was superbly arranged by Corstiaan Breugem and his fantastic team - Aebele Mink van der Molen, Dirk Bittermann, Henriette Swanenburg de Veye and Marvick Muradin.
ACPA Congress Tucson, Arizona 10 -13 April 2019
The Vice-Chair of COST Action European Cleft and Craniofacial Initiative for Equality in Care (ECCE) updated the congress on the progress of this project which is assessing access to cleft care across the Action’s 26 countries in Europe and will make recommendations for future ways of ensuring equal access for all.
ECCE TRAINING SCHOOL IN MALTAThe training school took place in Malta (25th of March to the 27th of March), with over 50 participants attended with various backgrounds in healthcare professions. The focus of the training school was on the patient perspective of care in cleft and craniofacial conditions. The participants truly enjoyed the training school and the social activities organised by Prof Jean Calleja Agius.
ST JULIAN'S, MALTA 24TH OF MARCH, 2019
The members of the Action met at Marina Hotel for the workgroup meetings and MC meeting. The different workgroups met during the day to discuss the way forward of the Action and identified research collaborations that can result in published papers based on the network collaboration that the Action facilitates.
The MC meeting went in accordance to plan, and the members were engaged and enthusiastic how the Action is proceeding.
MC member Prof Jean Calleja-Agius from the University of Malta was the excellent organiser of the meeting and the social activities.
Medical Faculty, University of Niš
NIŠ, SERBIA 13 – 15 SEPTEMBER 2018
The MC meeting and workgroup meetings took place at the Medical Faculty, the University of Niš on the Thursday 13th of September. The workgroup meetings were very fruitful and productive, and the MC meeting went according to the planned agenda.
For the conference on Friday and Saturday (14 - 15 the of September) over 200 participated from 28 countries to listen to the various lectures around the theme of the Action. The program included Ron Strauss (USA) that talked about "Refugees and Immigrants: Implications for Cleft and
Craniofacial Care and Health" and Bowornsilp Chowchuen (Thailand) that spoke about "Outcomes from Tawanchai Center" together with many other excellent speakers, the program can be found here.
The host of the conference, Julija Radojicic had also arranged great social events for the members of the Action and others. Everyone enjoyed this for the opportunity to get to know each other better and enjoy the exceptional Serbian hospitality.
European Reference Network (ERN) for craniofacial anomalies
The meeting took place at the Wilhelmina Children’s Hospital in Utrecht, hosted by Corstiaan Breugem and Aebele Mink van der Molen on the 8 June 2018. Several members of our COST Action participated in various roles, and Martin Persson talked about ECCE. During the 2-day meeting, fruitful discussion took place on how the two networks can collaborate in the future.
Also attending, part of the meeting, was Paul Boom, Dutch Ministry of Health.
Paul Boom, Dutch Ministry of Health - speaking at the event
Core Group Meeting Toulouse, France
The core group met in Toulouse, with the primary aim of the meeting was to detail questions for data collection for Working Groups 1, 2, 3. The went over all the questions generated and discussed in detail on how to progress so we the work can be launched at the conference in Niš in September. One aspect that was discussed is how we measure the access and equality of care, so we reflected on the European Patient Forum’s definition of this which was:
Available - in a specialised service all components of care should be available
Adequate- this is about quality of care
Accessible- is full care accessible throughout all stages of the treatment duration
Appropriate- service should be relevant to the health needs of different populations or groups, as healthcare needs to be inclusive.
Affordable- this means that people can access healthcare services without suffering financial hardship
The core group will in the near future compile all the questions, then revise and after that send out to the members of the Action for their feedback, with the objective that the questions will be finalised before the conference in Serbia.
The American Cleft Palate–Craniofacial Association
Martin Persson attended the 75th annual meeting of the The American Cleft Palate–Craniofacial Association that had about 800 participants from 23 countries. At the conference, Martin presented a one-hour presentation about the European project IHEM - How Healthcare Professionals Can Receive Training In How To Conduct An Initial Screening about The Educational Outcomes In Individuals With A Cleft. In that session, information about the ECCE was presented since that our Action focus is very relevant to the overall outcomes of that project. Besides from the presentation, a significant amount of networking took place and many individuals thought the ECCE project is interesting and could consider joining as an International Partner in the near future.
Core Group Meeting in Tallinn, Estonia
The core group met in order to generate a strategy to move Action forward on the 16 March 2018. Feedback on the outcomes of the first working group meetings in Zagreb – patient experience and impact, the function of the multidisciplinary team and the area of policy and funding indicated that a good start had been made in all work groups and summaries had been provided after the Zagreb meeting.
It was again stressed that this Action was not about clinical comparisons or approaches to different types of medical technique but about service delivery and meaningful outcomes for patients.
The first step is to get a snapshot of current cleft care across all the participating countries – at least one centre per country. There followed a long discussion about how this should be done, what form data collection should take and about the size of samples and timeframes. It was agreed that each WG leader should generate a set of questions that will be discussed at the next core group meeting.
In addition, discussion on how more countries can join our Action and how we will prepare for the conference in Niš, Serbia in September.
Several members of the COST Action ECCE attended the breakfast event at the European Parliament on the 27 February 2018, hosted by MEP Sean Kelly and accompanied by a diverse audience of other MEPs and policymakers, was an opportunity to get clefts and craniofacial anomalies on the Parliament’s agenda. The aim is to start pressing the European Commission for specific resources for cleft and craniofacial care in order to reduce the vast inequalities across Europe, enabling equal access to good quality lifelong cleft care. Martin Persson presented the purpose of the COST Action ECCE for the audience and how the Action will contribute to addressing these European challenges. Also participating was Karina Marcus from the COST office that promoted how vital role the COST Actions has in advancing research and influence policies.
School of Dental Medicine, The University of Zagreb, Croatia
The second MC meeting and first workgroups meeting took place at the school of dental medicine in Zagreb on the 25 - 26 January 2018 with 38 Action members attending the meeting and two representatives from the COST office. The event was fruitful and initiated the collaborative work towards the stipulated objectives of the workgroups.
WG1: primary level, patient as beneficiary
WG2: organisational context, the multidisciplinary clinic
WG3: funding and policies, administration and resources
Also, on the evening of the 24 January, an outreach event that included information about ECCE and training about the psychosocial aspects for patients undergoing appearance altering procedures, for about 30 healthcare professionals in Zagreb.
Tawanchai Cleft Center, Thailand
As part of a project to initiate collaboration between Khon Kaen University and Kristianstad University, a series of psychosocial workshops for healthcare professionals that works with individuals with cleft lip and palate or craniofacial conditions was conducted. Between 22 - 24 November 2017 approximately 50 - 60 healthcare professionals participated in the workshops and during that time the ECCE was presented as well.
University Medical Centre Ljubljana, Slovenia
Our Slovenian member Martina Drevensek arranged on the 20th of October a training session for 45 Healthcare professional facilitated by Gareth Davies and Martin Persson that attended in the capacity of their respective organisations - European Cleft Organisation and Kristianstad University. The next day a family educational day was arranged and 12 families attended to receive information and participate in fruitful discussions. In both events, information about ECCE was presented.
Cleft lip and palate conference in Thessaloniki, Greece
A conference was arranged by our Greek members - Aikaterini Koleventi and Maria Bigaki for the local healthcare professionals. At the conference, other members of the Action (Youri Anastassov, Radu Spataru, and Martin Persson) presented their research and experience in this field, including a special section about ECCE. About fifty healthcare professionals attended the two-day conference.
1st Management Committee Meeting
The first meeting of the Action took place on the 5 October 2017 in Brussels. At this meeting, the members of the Action introduced themselves and general information on COST mechanism and on the funding and reporting of coordination activities. Dr Martin Persson (SE) was unanimously elected as the Chair and Mr Gareth Davies (NL) was unanimously elected as the Vice-Chair.
The following persons were appointed to the following roles:
WG1 – Primary level, patients as beneficiary: Leader: Julija Radojcic(Serbia
WG2 – Organisational context, the multidisciplinary clinic: Leader: Jean Calleja Agius(Malta)
WG3 – Funding and policies, administration and resources: Leader: Triin Jagomagi (Estonia)
WG4 – Health system goals: Will be appointed after 2 years
WG5 – Dissemination and communication: Leader: Thomas Nilsen (Norway)
STSM coordinator: Nick Sharratt (UK)
Science Communication Officer: Aikaterini Koleventi (Greece)