To improve skills and entrepreneurial competences for advancing economic and social innovation in central European regions
Innovative patient centred health care services – advantages of establishing a close network in celiac disease patient health care
Healthy and active aging is one of the greatest social challenges in EU facing longer life expectancy. Early prevention of chronic diseases that have severe impact on general well-being of patients is extremely important if we want to reach this goal and ensure sustainable health care systems in CE. Lack of development and promotion of innovative quality health services, disease management models and education have a profound negative effect. To tackle this challenge, this project will demonstrate development and pilot testing of innovative health service model in management of celiac disease (CD), by using CANVAS business model, aiming at improving knowledge, management and organizational capacities. CD is a model of a lifelong disease caused by ingestion of cereals. It affects 1-3% of population (up to 5 million in CE) of all ages. It is estimated that 80% of people having CD are un/misdiagnosed. Diagnostic delay remains 6-10 years. Undiagnosed/untreated CD leads to a number of severe (potentially preventable) complications: infertility, osteoporosis, neurological disorders, malignancies, etc., which have profound effect on quality of life. CE regions have different knowledge capacities and health care systems, which are insufficient and only partially address current problems. By transnational cooperation and analysis of differences in diagnostic approach, experts' knowledge and patient awareness and satisfaction and benchmarking of existing patient management models we will gain important data to develop e-learning tools for health care personnel and patients, to close the knowledge gap between stakeholders and to improve patient support. In each region an innovative pilot services will be tested, based on which a universal model will be designed including organizational improvements and implementation of best practices. This will enable us to develop a patient centered health care service, and thus ensure healthy and active aging of CD patients.
|Project output number||Project output||Project output quantification|
|Output O.T4.1.1||Policy recommendations||1,00|
|Output O.T1.1.1||Assessment of Celiac Disease management practices||1,00|
|Output O.T2.1.1||E-learning tool for HCPs||1,00|
|Output O.T2.2.1||E-learning tool for patients||1,00|
|Output O.T2.3.1||ICT App for HCPs||1,00|
|Output O.T3.1.1||Development and implementation of 10 pilot projects||10,00|
E-guidelines protocol of celiac disease treatment for health care professionals was designed by partnership to help health care professionals to improve diagnostic proces and management of celiac disease.
This e-brochure was prepared building on available knowledge from bilateral SLO-HU LQ-CELIAC project.
Nuša 11 years and mom Simona: »The day, when our oldest daughter was diagnosed with coeliac disease was one of the happiest days for our family. The diagnosis “coeliac disease” was among the suspicions of doctors for the best and the least harmful disease. We were happy, that the marathon from one doctor to another had finished and that we finally identified what was wrong and how we can help our daughter«.
CE regions have different knowledge capacities. To close the knowledge gap between HCPs and to improve their knowledge as well as diagnostic process, we have prepared e-guidelines protocol for celiac disease treatment.
Radio SI reported about the efforts of Focus IN CD project to raise
awareness and improve the knowledge of HCPs and patients in Central Europe.
Focus IN CD is built on available knowledge from LQ - CELIAC, another celiac
disease related project to empower patients and to improve their
self-management as well as to educate all involved professionals.
We are putting (chronic) patient into a center, for which self-management is a very important issue to leave independent and a high quality life. To achieve this goal, we have to offer a comprehensive education model as well as health care service.
Educational pilot project event in a frame of »Mentoring service for newly diagnosed patients« was held last Saturday in Maribor in organization and cooperation of Municipality of Maribor, Slovenian celiac society, University medical center Maribor and E-zavod from Ptuj.
Almost 70 newly diagnosed patients and mentors attended the event which took place at “Izobraževalni center Piramida Maribor”.
We presented the Focus IN CD project, comprehensive celiac disease management model, which is one the main aims of the project. Our professionals gave lectures about the facts of celiac disease (doc. dr. Jernej Dolinšek, dr. med), about a gluten-free diet (mag. Aja Kocuvan Mijatov), about a psychosocial aspects of living with chronic disease (Jernej, Vidmar, univ. dipl. psih.) and about the rights of chronic patients and financial incentives available to chronic patients (Simona Ornik). Cooperation is crucial, Inflammatory bowel disease society President Ms. Mateja Saje, presented a very well organized educational concept of their society. A video tutorial »How to rearrange gluten-free kitchen« was prepared and presented by »FERI« students’ Špela, Domen and Patrik. After the lectures session, we tasted a safe glute-free pumpkin soup and homemade gluten-free bread, backed by Ms. Majda Jurše, who took care also of the basic bread baking workshop for new patients, which was organized in the afternoon.
The third part of the startup self-management event »A gluten-free shopping« will be organized on Thursday, 26. October 2017. Main topics: how to choose and buy safe gluten free products, how to read the declarations, how to recognize the traps and avoid future problems. New patients will be mentored by Simona Ornik.
All activities in a frame of pilot activity will hopefully led to a new social innovation service, offered permanently by celiac societies, Slovenian celiac society and Celiac society from Novo mesto. Our partner societies from Budapest and Rijeka will join us at later stage and probably adapt and adjust new service to their needs.
On 16 September 2017, the German Society for Celiac Disease (DZG) invited again to the gluten-free Oktoberfest which was held in Aschheim near Munich. In addition the leisure programme, presentations on new celiac projects and topics were offered. Our German partners KUM and CHF presented the Focus IN CD project including preliminary data of the patient survey and received very good feedback and interest of the participants.
Jasmina Dolinšek presented the Focus IN CD project and won the award
for the best presentation in the field of innovation.
20 years ago the first transnational Interreg programme was launched for central European regions and cities. What started with Interreg IIC CADSES has evolved into today's Interreg CENTRAL EUROPE. Since 1997 transnational cooperation has helped hundreds of great ideas come true.
We celebrated this anniversary with a major conference, which have been organized from 21th to 22th September 2017 in Berlin, Germany. We took a closer look at what transnational cooperation has done for central Europe and discussed the role of our programme and projects beyond 2020. Last but not least we have opened a new call for proposals at the conference.
The most important topics at the annual conference were:
The conference was attended by representatives of the Municipality of Maribor:
Jasmina Dolinšek presented the Focus IN CD project and won the award for the best presentation in the field of innovation.
Interreg Central Europe project Focus IN CD has been short-listed for the prestigious European Health Award 2017 such as five health projects.
The European Health Award honours initiatives aim to improve European public health. Important criteria’s are: more than one European country should be involved in the initiative, it should show innovation and be sustainable, results should be transferable to other states and address a significant threat.
We have got first results of the European Health Award 2017 application, submitted in June. We are pleased to announce that our project Focus IN CD has been selected for the shortlist and that it will compete for the prize this year alongside five other european health related projects.
The winning project will be decided in September by a jury of leading European health experts, and the winner will be officially announced at the European Health Forum Gastein (https://www.ehfg.org/) in the Opening Plenary on Wednesday 4th October 2017.
The European Health Award honours projects and initiatives aiming to improve public health or healthcare in Europe. It was established in 2007 to promote cross-border cooperation, multi-country working and the development of transferable initiatives which address current challenges such as disparities in health status, access to services and the provision of treatment within Europe.
Projects being nominated must already be in its implementation phase, applicants should be able to provide some preliminary results, the initiative must be implemented in at least two European countries and should focus on public health and address an important threat to the health of the population in terms of prevention or health promotion, improving quality of care or access to care or through increased efficiency or cost-effectiveness, The initiative should be innovative and sustainable and should have the potential to be transferable to other countries.
The winner of the European Health Award will be selected by the jury panel in September 2017, the Award will be presented at the European Health Forum Gastein in October 2017.
Let us cross our fingers.
Croatian Focus IN CD partners organized meeting with nutritionists and gastroenterologist at Clinical Hospital Center Split, Department of Paediatrics where they presented the project, Interreg CE programme, project partners of Primorje and Gorski kotar County and their role in the project. They prepared a short WP1- questionnaires presentation and discussed possibilities for collaboration to foster cooperation between NGOs, local public authority and HCPs.
Focus IN CD project will be promoted by the partners at the ESPGHAN conference. 50th Annual Congress of ESPGHAN will be organized from 10 to 13 May 2017 in Prague.
We are going to promote project results of Focus IN CD project. Analytical surveys, translated into languages of all project partners, consisting of specific questions designed to assess HCPs celiac disease knowledge will be presented.
Every year the ESPGHAN meeting attracts the key opinion leaders in the field of Paediatric Gastroenterology, Hepatology and Nutrition from across Europe and all five continents, turning it into the largest conference of its kind worldwide.
The previous 49th congress held in Athens was attended by more than 4.000 delegates from 103 countries.
Association of celiac patients Primorsko - goranska County organized First nutritionist’s consulting for celiac disease patients. The main goal of the meeting was to establish a new service for our society members.
We agreed to start with a pilot “Nutritionist consulting service” for newly diagnosed patients, which will be very helpful after being diagnosed.
Society proudly presented Focus in CD project.
A special health service day has been organized for the inhabitants of the village, families, patients and general public, focused on healthy life and active aging.
We presented our activities and had an informal presentation of the Focus IN CD project. We spoke about celiac disease, the gluten-free diet and details of our project goals and achievements.
On this special day we managed to contact our important stakeholders healthcare professionals, gluten free manufacturers, patients and the local general public and informed them about Focus IN CD project.
Croatian Focus IN CD partners visited Istrian celiac disease patients and invited them to create social innovations to improve the quality of life of celiac disease patients.
Focus in Cd project and their activities were presented in Istria County. Istrian society was invited to take part in our questionnaires which will enable assessment of the state of the art in the field of celiac disease management. The outputs will serve as starting point for development and implementation of innovative E-tools.
TV ISTRA "Hour of health" presented the Interreg Central Europe programme project Focus IN CD, our activities main goals and planned outputs.
Celiac disease is a public health care issue and a social challenge of 21th century.
Raising awareness is a very complex task, where NGO-s play the most important role. Transnational cooperation can help us to tackle these challenges.
HRT RADIO PULA " Stetoskop” presented the celiac disease and Focus in CD project. Special guests on the broadcast were: Dr. Goran Palčevski (University Hospital Center Rijeka), Marina Milinović (Association of celiac patients Primorsko - goranska County) and Đitka Bartolović (Association of celiac patients Istria County).
The general public was informed about celiac disease, about life with celiac disease and about daily problems of celiac disease patients.
Project partner “Association of celiac patients Primorsko – gorska Country” organized a meeting with preschool educational institutions to inform them about Focus in CD project.
Kindergarten CPO "Potok" Rijeka was the first one in Croatia with a separate gluten free kitchen and a special care for small celiac disease patients.
They are interested about latest news in the field of celiac disease and project achievements.
Project partner “Association of celiac patients Primorsko – gorska Country” presented the project Focus in CD in the TV show "Good Morning Croatia"/ "Dobro jutro Hrvatska". The general public was informed about the Focus IN CD project, work package activities and benefits for chronic patients.
One of the important goals of the Focus IN CD project is assessment of the current practices in Coeliac diseases management in Central Europe. This will enable us to better understand the differences in the region and possible existing gaps, and will be the basis for more focused development of e-learning tools. Surveys are ready and participants have already been invited to provide their data.
The meeting was attended by doctors who work at the gastroenterology units of the hospitals of the region Friuli-Venezia Giulia (Trieste, Gorizia, Tolmezzo, Udine, Pordenone) that performs the diagnosis of celiac disease and follow-up of patients.
The meeting was also attended by researchers where research is conducted on celiac disease (University of Trieste, IRCCS Burlo Garofolo and IRCCS Centro di Riferimento Oncologico) and by a nutritionist who coordinates the care of patients with celiac disease, diabetes and other chronic diseases.
During this meeting the project "Focus on CD" was presented. The initial details, on possible collaborations on the diagnostic procedure and the use of the platform “early nutrition”, were implemented.
The meeting was organized as a training event for young paediatricians, nutritionists, food technologists and psychologists. Seminars included information on Celiac Disease, Diabetes, dietary requirements etc.
The aim was to make the public able to manage the creation of a teaching program/presentation in the field of celiac disease and diabetes. This knowledge will be later used during the training activity in schools and public events.
The project implementation training on 22 November 2016 took place in Zagreb, with the main aim to provide project partners with information, support and advice on better implementing the projects. The presenters answered a lot of different questions about how to prepare progress reports and how to ensure a sound project implementation.
To kill two birds with one stone, we organized a Slovenian - Croatian project partner meeting before the end of the first reporting period to better manage the complex tasks of the project. It is the first time to participate in a European project for Focus IN CD Croatian partners University hospital center Rijeka, regional Association of celiac patients from Rijeka as well as the third Croatian partner Primorje – Gorski Kotar County.
On Friday, 7th October 2016, at the headquarters of the Primorje-Gorski Kotar County, Slogin kula 2, 51000 Rijeka, the partners of the “Focus IN CD” project from Croatia and Primorje-Gorski Kotar County, have organized the joint press conference to present the project to the general public.