INNOV-Care proposed and tested an innovative care pathway for the social inclusion of marginalised groups (affected by rare diseases) and suggested up-scaling roadmaps.

INNOV-Care contributed to support the EU and Member States (MS) to implement the necessary structural reforms of social protection systems, by proposing and testing an innovative care pathway for the social inclusion of a EU marginalised group of over 36 million EU citizens and households (affected by rare diseases), and proposing up-scaling roadmaps than increased the model’s impact to other 80 million vulnerable EU citizens (people with disabilities) and beyond (i.e. chronic diseases). These groups are often not sufficiently supported by mainstream social systems, and struggle to make the most of their potential throughout their life course. They are often not able to lead an active professional and social life, and end up finding themselves in situations involving poverty. Additionally, family members – being often the main carers – frequently find themselves in burn out situations, unable to cope physically and psychologically with the situation, which leads them to reduce professional activity and face consequent economic difficulties.

INNOV-Care’s model resulted from a strong partnership between public, private, and civil society organisations, and did not only aim at addressing the vulnerable group’s needs, thus increasing social inclusion, but also kept in mind the need for the model to be cost-effective and to produce efficiency gains necessary to avoid more burden on MS finances and contribute to MS sustainable growth, in line with Europe 2020 EU’s growth strategy. The INNOV-Care social experiment included access to both a national-level one-stop-shop service for rare diseases (Resource Centre) and to regional case handlers (personalised care), in cooperation with an EU network of expert service providers and in close partnership with regional and national public bodies, thus promoting the horizontal integration of services and striving to approach vertical integration options. This innovative holistic pathway was first tested in a pilot region in Romania. The social policy innovation experiment was evaluated by high-level experts in order to prove or disprove causal relationship between the intervention and the outcome measured. Scaling up options of the model to other MS and social care areas were identified together with public authorities by building a strong and sustainable partnership in particular between service providers, public authorities, users (patients), and academics.

In order to provide a clear insight on the problems addressed by the new care pathway and on its efficacy and impact, INNOV-Care conducted robust baseline and evaluation data collection on: patient’s social needs and MS social systems, the impact of the social experimentation, and the cost-benefit of the proposed care model. The project therefore was able to collect a significant amount of important data, which combined with the up-scaling options report and roadmaps was indeed able to support MS in implementing structural social reforms.

Team:

• DI Dr. Anette Scoppetta
• Dr. habil. Ursula Holtgrewe (project leader)
• Drⁱⁿ. Barbara Glinsner, MSc
• Nicol Gruber, M.A., BSc
• Magª. Katharina Handler
• Dr. Mag.ª Stefanie Konzett-Smoliner
• Juliet Tschank, M.A.
• Nela Šalamon, B.Sc.
• Dr.in Mag.a Irina Vana

Section: Work and Equal Opportunities

Partners:

• Asociatia Prader Willi, Romania
• County of Sălaj, Romania
• European Organisation for Rare Diseases
• FINOVATIS
• Institute for Economic Research
• Karolinska Institutet, Sweden
• Ministry of Health, Social Services and Equality Spain (Coordinator)

Related Articles:

• News: INVITATION: Social Policy Experimentation – Opportunities & Challenges
• News: Take part in the Final Conference of the INNOVCare project
• News: Case Management: Integrierte Versorgung für Menschen mit seltenen Krankheiten

Tags: health, social innovation