Page 386 - Read Online

Page 6 of 10 Sharratt et al. Plast Aesthet Res 2020;7:35 I http://dx.doi.org/10.20517/2347-9264.2020.99
[30]
2. The ECCE Action complements the European strategy of developing sustainable actions .
3. The ECCE Action will develop and share knowledge on what works for whom and will facilitate
improvements in cleft and craniofacial care, increase the chances of equal access to care.
4. The ECCE Action will actively facilitate interaction between clinicians, scientists and policymakers in
seeking ways of ensuring that all affected families have the right to receive the minimum standard of
care in all of the participating COST countries.
5. The ECCE Action could bring about substantial cost savings in relation to joint research activities
across Europe.
6. The ECCE Action will increase the capacity for research by generating awareness amongst policymakers
of the need for research into the cleft and craniofacial care and healthcare integration.
7. Since congenital anomalies do not discriminate against anyone, they also affect socially disadvantaged
target groups, such as immigrants, the unemployed and the Roma population; thus, the ECCE Action
[33]
[32]
[31]
addresses key areas of European focus such as disability , children’s rights and social exclusion .
Training schools
An integral part of the ECCE Action is the organisation of training schools. Four training schools are
planned, and they relate to the objectives of the different working groups. To date, one training school has
been held, with the second one postponed in view of the COVID-19 pandemic.

The first training school was held in March 2019 in collaboration with the University of Malta, Valletta.
This training school focused on the clinical and research-oriented approaches of integrated healthcare
in relation to the decision-making process related to the diagnosis and treatment of patients. Since the
patient is the primary beneficiary, this school trained the participants to facilitate patient empowerment
programmes to make the patient feel he/she is an equal partner in decisions made around his/her care and
[34]
have the confidence to pursue his/her own life goals unhindered by the stigma of his/her condition .
The second training school is planned for October 2020 and will be held in Estonia. The focus will be
on equality of care within the context of multidisciplinary teamwork, organisational structures and
the implementation of change and will include training in the Health Innovation, Implementation and
[35]
Impact (HI3) concept . Further details of both these training schools are included within Supplementary
Materials 1. The final two training schools will be held during the final year of the Action.

Conferences
The ECCE Action conferences are free to attend and are vital to the Action’s activities. Three major
conference events are scheduled during the life of the Action, which bring together a rich and diverse
network of researchers and stakeholders: user groups (beneficiaries); clinicians; health service providers
(hospitals and health system coordinators); experts in public health medicine; representatives from
health ministries; health economists; NGO’s; and political lobbyists and activists. These events enable
knowledge sharing at all levels, which is key to the Action’s outputs and integral to promoting and
facilitating dissemination. They are attended by local healthcare professionals, trainees, researchers and
students in order to increase general awareness of and engagement with the issues discussed. They help
cement research relationships between the COST participating countries leading to new connections and
relationships, which enhance future research funding opportunities, sustaining the long-term effectiveness
of treatment for all patients with orofacial clefts and other craniofacial conditions.

To date (June 2020), two conferences have been held. The first action conference was held in Niš in Serbia
in 2018 and the second in Kristianstad, Sweden in late 2019. Further details are included in Supplementary
Materials 2. The final Action summit will take place in Bucharest, Romania in September 2021, with a
focus on the Action’s outputs and recommendations and, importantly, promote the sustainability of the
network(s) beyond the life of the Action.