DARA – The First Digital Solution for Integrated Continuous Assistance for Children with Cancer in Romania

Partners: Oncochain

Sponsored by: ING Bank – through the program “Adopt a project” 2020

DARA is a digital platform that collects electronic medical files from Romanian children diagnosed with cancer. Through the platform, pediatric oncology doctors and other members of the medical care team can access all the information pertaining to the case and can monitor in real time, both in the hospital and in the community, all the parameters that are particular to each case. This includes: chemotherapy, radiotherapy, transplant, surgery, paraclinical investigations, palliative care, as well as home monitoring parameters: physiological parameters (blood pressure, temperature, heart rate, respiratory rate, etc.) and functional parameters (pain, appetite, activity – everything relating to the monitoring of the quality of life).

Our partners, Oncochain, provide technical assistance for the development of this digital platform.

The platform is specifically structured to accommodate clinical processes in oncology assistance. It was customized for pediatric patients by modifying the existing units in order for them to be compatible with classified lists and data necessary in pediatric oncology.

What does this digital solution mean? 

This application approaches the division and deficiencies in the care process of children with cancer (or other serious diseases) in Romania. Because of the small number of centers where these children can be competently treated and because of their lifelong need for monitoring and support, the vast majority of these young patients lacks the qualified assistance they need from the moment they exist the hospital where they had undergone their treatment. Moreover, from the very beginning of their medical journey, assistance with multidisciplinary teams (the so called tumor boards, an elementary standard in developed healthcare systems) is almost nonexistent in Romania, due to the inability to bring together professionals from different fields and hospitals.

This solution is viable and feasible and it can transcend the location and communication barriers. It is a digital platform, customizable in accordance to all international specifications that are individual to pediatric oncology care, and that incorporates standards of diagnosis and treatment for every step of the disease (including long term, post therapeutic follow up). It also allows for the formation of multidisciplinary teams that are able to promptly address the needs of the child, wherever he may be and in accordance to medical practice guides that are active.

Background

This platform started from our need for home monitoring of children with cancer and other serious diseases that are under the supervision of the Pediatric Oncology Hematology and Reumatology Department in Constanta, during and after their treatment is finished. We are doing this through our reference project “Treatments at the homes of children with cancer in Dobrogea”. We encountered the need to plan, register and asses the assistance offered to each of the beneficiaries, as well as the difficulties of real time communication with attending physicians in Bucharest or other medical centers in the country. Thus, together with Oncochain, we started to develop and customize their adult platform.

How does it work?

The DARA platform monitors all the important parameters of the disease and also registers all investigations, treatments and needs that arise throughout the home care process – everybody that is involved in the management of the case (pediatric oncology doctors, general practitioners, nurses who treat the child at home) are permanently aware of the health of the child. They are, thus, able to include all details relevant to the case in the platform. Therefore, by including all experts in the relevant fields for the diagnosis and treatment of each individual case, the application enables the formation of virtual Tumor Boards – thus excluding the main obstacle that currently prevents these multidisciplinary teams from functioning – the physical distance between experts.

Our solution is unique in Romania to allow the continuous digital monitoring of children diagnosed with cancer, both during hospital stays and at home, throughout the whole period in which they need assistance and special care (in pediatric oncology, this is needed for long periods of time, after the treatment).

What will it do?

The national use of the DARA platform has the potential to ensure maximum and uniform standards of assistance for all children and young people with a cancer diagnosis (4500 from 2010 to the present) in Romania, wherever they are (at home or in the hospital). Their chances for survival and a fulfilled life are thus improved. This platform can exclude all unequal access to appropriate expert services that now exists in our country between rich and poor families or rural and urban ones.

The application will offer dynamic support for the development and improvement of procedures and follow up protocols for the pediatric cancer patient. Also, it will support the development of multidisciplinary cooperation abilities and case management for pediatric oncology (a concept that is highly required but absent in Romania)

The data collected on the platform will allow for the assessment of the quality of life of children/young people with cancer during and after treatment and also, the remote assessment of the performances of the health services addressed to them.

The platform is structured modularly, which allows for adding new functions in order to extend the services offered – including hospital-home follow up, Tumor Boards, development of a system to actively asses and assist survivors and other e-Health functions.

Furthermore, the concept and base functions of this platform can easily be transferred to other serious pathologies for children and young people – especially in the field of rare diseases, where the expert assistance capacity is even more reduced and fragmented than with pediatric cancer.

We are determined to take this model to the next level, so that it will cover a large field of needs, at the highest standards, in an extended geographical area, with the collaboration of many oncology centers in the country. For us, the next level means development and acknowledgement for this model as an optimum alternative to conventional hospitalization, in order to safely cover the specific care needs of children with a cancer diagnosis (monitoring during and after treatment, administering treatment, palliation).

By implementing the DARA platform in many oncology departments in the country we will prove the superiority of patient digital monitoring and all the advantages that come with the collection of these medical data specific to children suffering from cancer. By centralizing all the data at a national level we will create an extremely valuable research database.

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