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Description
We will focus on increasing prevention and timely dg. of selected non-communicable (NCD) and communicable diseases (CD) in a representative group of socially excluded communities (EC), with a special focus on the Roma community (RC). The multi-disciplinary team of this project, including e.g. general practitioners for children and adolescents, geneticists and neurologists, ophthalmologists, dentists, pediatricians, experts on children accidents, will focus on the representative group EC and will cooperate with the Coordinators of the Reg. Centers of Health Promotion (RCHP) at SZU.cz. NCDs, which comprise e.g. neurodevelopmental dis., cong. cataracts, dysmorphism, demyelinating neuropathies, cardiogenetics, non-syndromic prelingual deafness, are increased in RP, but are often underdiagnosed in primary care. Often, specific NCDs are being characterized as ‘social neglect’ whereby from dif. diagnostic point of view it is important to consider e.g. the aforementioned sensorimotor disorders, which may be primarily responsible for cognitive, social- and school-related issues in the RP. Moreover, in EC we will also focus on the lack of awareness or insufficient access of families from EC to specialized care, increased risk of trauma or CD, including poor dental care. In addition, in EC the mentioned NCDs potentiate the increased risk of childhood trauma/accidents and CD. Therefore, we will be raising awareness of specific health issues in EC among practitioners for children and adolescents and RCHP by organising conferences. We will thus identify causes and prevalence of the NCD/CD mentioned in EC to develop expert background information in collaboration with relevant professional societies or professional organizations, and international partners from Norway and Romania, in order to optimize respective ''healthcare pathways''. In summary, we aim to improve preventive, social and health interventions for specific NCD/CD occurring in all population segments of EC.
Summary of project results
The main aim of the project was to improve access to health care for residents of excluded localities, to improve detection, diagnosis and specific non-communicable diseases through the education and training. The project was initially affected by the COVID-19 pandemic, when not all planned activities could be implemented, but later were successfully carried out.
The main output of the project is represented by the publication "Rare Genetic Diseases in the Roma Population: their Diagnosis and Treatment", which summarises all recommendations, including case studies, that we have prepared within the project on leaflets for individual diseases. In addition, there are dedicated freely available webinars (youtube.com format) for the addressed topics.
Moreover, the project also has contributed to raising awareness of rare diseases in the Romani population in excluded localities, not only among professionals but also among the general public. In this regard, training schemes and webinars carried out within the project for both the healthcare professionals and the lay public have been particularly important. Media activities were focused on raising awareness among the general public through radio, press and television presentations, as well as through meetings with patient organisations.
An integral part of the project outcomes is based on professional publications and monographs, but above all recommendations for the pediatric and adult general practitioners who are in the first line of contact with patients and their families.
An important part of the project was cooperation with Roma coordinators under the auspices of the National Institute of Public Health in Prague, who actively sought out potential cases and referred them to a general practitioner who, based on our educational seminars, publications, webinars and expert recommendations prepared by us, could better guide their further treatment or referral to a specialized centre to confirm or refute the diagnosis of a rare disease. In this respect, project promoter have established appropriate patient pathways for Roma patients with specific rare diseases through the health care system, and thus improved the efficiency of diagnosis and care.
The main benefit of the project is the improvement of health care and the training of the professional public in the prevention, initial detection and diagnosis of specific communicable and non-communicable diseases and, above all, directing patients through the healthcare system of so-called "health care pathways", which also results in economic savings due to the effective care of members of Roma communities and residents of excluded localities.