Press release – The end of SUS-TIN Project implementation

27.02.2024

ARNIS has completed the implementation of the online platform for digitizing communication in neonatology, in collaboration with the Neonatology Department 1 of the Cluj-Napoca County Emergency Clinical Hospital

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The Romanian Association for Long-term Hospitalized Newborns – ARNIS concludes the project “SUS-TIN – increase (SUS) the quality of medical-social services in Neonatal Intensive Care Unit (NICU), and the beneficiaries later become donors (SUSȚIN)”, in collaboration with the Department of Neonatology 1 of the Cluj-Napoca County Emergency Clinical Hospital, with the financial support granted by Active Citizens Fund Romania, a program financed by Iceland, Liechtenstein and Norway through EEA Grants 2014-2021.

RESULTS

In the 10 months of operation (05.2023-02.2024) the platform counted over 310 users, direct beneficiaries. Of these, more than 140 are future parents or parents with a baby born at term, and more than 135 parents with a baby in neonatal intensive care have benefited from the free services offered by the platform, and more than 30 medical staff from the partner hospital have an account and support parents online. More than 240 hours of educational video materials were accessed, and through the lens of the objective of increasing the capacities of ARNIS, the association co-opted more than 863 recurring donors and a total of more than 103,779 lei in donations starting from 01.01.2023.

The platform will continue to offer free services to parents, even after the end of the funding offered through the Active Citizens Fund Romania program, financed by Iceland, Liechtenstein and Norway through the EEA Grants 2014-2021.

The operation of the platform will be ensured for a period of 5 years. ARNIS will ensure maintenance and support from its own funds, from recurring donations from natural persons, but also through the support of the project partner in the provision of Internet services, the company DIGI | RCS & RDS.

TESTIMONIALS

“Now it’s the first time he sees him because he was away at work and couldn’t come. Now he is most proud and happy dad able to see his child.” beneficiary of the platform, the Onuc family

“For parents, SUS-TIN represents the opportunity to complete online courses, both on childcare and those on newborns in intensive care. Also, there is a chance for parents and other family members to see the child on camera during the specified time interval. For the medical staff, checking the functionality of the livestreaming was an additional concern. But the moment when the parent tells with joy the fact that he saw his child, in those moments you realize that a small thing is an important thing and it could be achieved through this program. Good luck further!” Dr. Hășmășanu M., Neonatologist in the Department of Neonatology 1 of SCJU Cluj-Napoca

The purpose of the SUS-TIN Digitalization Platform was to facilitate communication and increase the quality of medical and social services provided to newborns (through parent-child communication, education and information for parents), but also to develop the sustainability and fundraising capacity of ARNIS. The total value of the project implemented in the period 04.2022-02.2024 was 107,782 euros.

Services and benefits that the SUS-TIN Platform (https://sus-tin.arnis.ong/) brings (1) Parent-baby video communication from NICU: livestreaming of images of the baby from the incubator, only to the own parent, (2) Educating parents about baby care: Childcare course with 6 chapters in video format and 13 Video Seminars for premature newborn’s parents, (3) Doctor-parent communication with newborns in NICU, (4) Fundraising, (5) Communication of results on the platform.

Project carried out by the Romanian Association for Long-Term Hospitalized Newborns – ARNIS in collaboration with the Cluj-Napoca County Emergency Clinical Hospital, Neonatology Unit 1, with the financial support of Active Citizens Fund Romania, a program financed by Iceland, Liechtenstein and Norway through EEA Grants 2014-

2021. The purpose of the project is to facilitate communication and increase the quality of medical and social services provided to newborns and develop the sustainability and fundraising capacity of ARNIS.

With the support of: Sudului Commercial Development Society SRL, Aimee Consulting & Advertising SRL, DIGI |RCS & RDS, Ikea Romania, OTP Bank Romania Foundation

With the support of the media: Radio Romania, Radio Romania Actualitati, Bucharest FM, CASPA – Community of Patient Associations, Medicalmanager.ro, Qbebe, SuperBebe, Romania Pozitiva.

About the Active Citizens Fund Romania Program

The Active Citizens Fund Romania program is financed by the EEA Grants 2014-2021. The overall objective of the Grants is to reduce economic and social disparities and strengthen bilateral relations between the 15 beneficiary states and the donor states (Iceland, Liechtenstein, Norway). The program is administered by the consortium composed of the Foundation for the Development of Civil Society, the Foundation for Partnership, the Resource Center for Roma Communities, the PACT Foundation and Frivillighet Norge, which acts as the Fund Operator appointed by the FMO – the Office of the Financial Mechanism for Grants EEA and Norwegian. Active Citizens Fund Romania aims to strengthen civil society and active citizenship and increase the capacity of vulnerable groups. With a total allocation of €46,000,000, the program aims to develop the long-term sustainability and capacity of the civil society sector, enhancing its role in promoting democratic participation, active citizenship and human rights, while strengthening bilateral relations with donor states Iceland, Liechtenstein and Norway. For more information about Active Citizens Fund in Romania, please visit www.activecitizensfund.ro. For more information on the EEA and Norwegian Grants, go to www.eeagrants.ro.

About ARNIS

ARNIS is the Romanian Association for Long-term Hospitalized Newborns and represents the voice of patients with birth conditions in Romania since 2013. The mission of ARNIS is to improve the health of long-term hospitalized newborns in Romania through prevention, information and civil society education projects regarding preterm birth, implementation of Family Centered Care principles in neonatal intensive therapies and alignment of National Standards with European Care Standards developed by EFCNI, as well as providing support to their families in the medical recovery process of children, up to the age of 18. For more information go to https://arnis.ong/

Interview with Corina Croitoru, ARNIS President and SUS-TIN Project Manager

From parent to parent: Interview Corina Croitoru, President of ARNIS

Corina Croitoru is president and founding member of the Romanian Association for Long-term Hospitalized Newborns. In the last 24 months, Corina Croitoru has been closely involved in the management of the project “SUS-TIN – We increase (SUS) the quality of medical-social services in Neonatal Intensive Care (TIN), and the beneficiaries later become donors (SUSTIN)” financed by the Active Citizens program Fund Romania, financed by Iceland, Liechtenstein and Norway through EEA Grants 2014-2021.

The SUS-TIN project is implemented in the Cluj-Napoca County Emergency Clinical Hospital, Neonatology Department 1 and consists of an online platform dedicated to parents.

The platform offers several free services, including an education component for all parents, both those with a full-term baby and those with a baby requiring neonatal intensive care, and an innovative component, a livestreaming video transmission service with the baby in the incubator, for parents who, for various reasons, cannot stay with their long-term hospitalized newborn.

1. Where did the idea start and what was the need for such a project?

The idea came as a result of discussions with medical professionals and parents, over more than 10 years of activity, in an attempt to facilitate better doctor-parent communication, to provide education to parents, but also to help facilitate the attachment of the parents to the baby. Of course, the chasm imposed by the COVID-19 Pandemic accentuated the lack of communication and affected the attachment, but it led us to create this online platform. We want to be prepared and with the parents of newborns hospitalized for a long time, regardless of the epidemics or impediments that come and make access to the wards difficult.

2. How did you manage to finance the SUS-TIN project?

The financing of the project came through the Active Citizens Fund Romania program, financed by Iceland, Liechtenstein and Norway through the EEA Grants 2014-2021. We wrote an application, and although there were over 100 applicants, we were nominated among the few winning projects.

3. On what criteria was the project partner hospital chosen?

We had the agreement of the Department of Neonatology 1 of SCJU Cluj-Napoca since the application phase of the project. We chose this department for the pilot project because: It is one of the largest and best-performing level III intensive care departments in Romania; Cluj is a city especially open to IT and new technologies and people have understood the benefits of digitization; The ward wanted to be more open to families, understanding how crucial communication with them is. Although it was difficult because of the distance (we are based in Bucharest), I still think it was the best decision to choose the maternity partner.

4. What was the biggest challenge in implementing the project?

The biggest challenge was to coordinate the implementation of a project with such an important IT component (because no one in our team had done platform/application/IT systems development before). It was difficult to explain to the IT people the complex way of relating, communicating and functioning of the neonatal intensive care unit, so the project theme was the first challenge. The platform was created from scratch, there was no way to buy it ready-made and integrate all the desired components. Even the livestreamimg component (although it also exists in Europe and the USA) had to be adapted to the specificity of the neonatal intensive care units in our country. Since the creation phase of the platform, we have tried to comply with the legislation (GDPR, the rights of parents and children and healthcare professionals) and still make it possible to function. We have also developed an operating Procedure for the therapy ward, mentioning the roles of the medical personnel. Choosing the equipment (which video cameras to use, which system management tablets to use) and installing the video cameras on the ceiling (taking into account the continuous therapy work flow) were real challenges that caused some delays. It was a long testing process of 10 months (a process in which we had to change some components of the video network) so that now at the end of the project, the platform works.

5. Did you achieve everything you set out to do in the SUS-TIN project?

We may not have reached the number of users we originally wanted, but this is because it took several months of testing and reprogramming, security and data safety was a priority. But now we have a functional platform, with graphics suitable for the parents&children domain, and the number of users is constantly growing. As a functionality, I achieved everything I set out to do, I created all the subfields: parents can see their own baby in the incubator every day, they can do the education part at their own time and pace, they can receive information from the medical staff. As an association, we have streamlined our fundraising department and developed our direct debit donation mechanism, and the results are communicated transparently.

6. What benefits do parents get if they use SUS-TIN?

1. Parents with a baby in therapy from the Partner Maternity (in 2023-2024 only Neonatology Department 1 of SCJU Cluj-Napoca) can access the Course on caring for their fragile newborn and when they are close to discharge they can complete the Childcare Course. At the same time, they have the unique opportunity to be close (even virtually) to their baby in therapy, through the live broadcast. There are parents who work abroad, who live in other cities, mothers who have to take care of several children at home, there are periods of epidemics when the father cannot come to the ward, etc. For all these situations, the live broadcast is the only chance to be close to your child. 2. Parents-to-be or parents with a full-term baby (without medical conditions) can attend the Childcare Course for free. I therefore advise parents, regardless of the small town or village where they live, to create an account, to go online through the 6 videos of the Childcare Course, and afterwards the Certificate of Participation will be automatically generated, entitling them to 10 additional days of maternity leave.

7. Do you have a personal satisfaction or a moment when you felt that what you do is valuable?

I always refer to myself as a former mother of babies who were hospitalized for a long time at birth. Although I was hospitalized with my girls and saw them daily, for our family, the existence of this platform would have brought a lot of peace and joy, it would have meant a refuge of normality in the tumult of the experience of prematurity. I would have given anything to be able to inform myself, 14 years ago information was not as accessible as it is now. Looking at it from that point of view, yes, I think this platform is extremely valuable and I’m very proud that we were able to build it from the ground up. The existence of the childcare course on the SUS-TIN platform, free of charge, made with medical personnel, with information from the most current medical standards, available to be completed by parents at the national level, is another thing I am proud of!

8. How did the medical staff in the partner hospital receive the project?

I am very grateful to the team from Cluj, for the courage to open up to the parents! Although it was a long process of accepting the project, with heated discussions with all the shifts of nurses, we succeeded and took into account the mentioned problems, their suggestions. We have created a mechanism through which the platform transmits the images of each incubator, live, without sound, 1 hour a day, but does not hinder the work of medical personnel. I wanted us to come to the aid of medical professionals and not be another bureaucracy to go around. And I think I succeeded! Doctors can shorten the time they spend with parents to educate them (they go through the educational video materials made by ARNIS at their own pace) and at the same time they can know exactly what information each parent has covered and where they still need additions. GPs can send information to parents about their babies, from the platform, in a secure way.