On behalf of Genetic Alliance UK, I attended the INNOVCare Integrated Care Conference on 5 September 2018 in Brussels. The key message of the conference was the importance of person-centered and integrated care for rare disease patients and their families – and the need to make this a reality across Europe.
What is INNOVCare, and what was the conference for?
INNOVCare is a three year EU-funded initiative aiming to bridge the gap between health, social and support services across EU member states. The conference, with 100 participants from 20 countries, was the final event of the INNOVCare Project, and saw the official announcement of the INNOVCare project’s findings and subsequent recommendations
Juggling Care and Daily Life Survey
Raquel Castro, Social Policy Senior Manager at EURORDIS, kick-started the conference by talking us through the key findings of the ‘Juggling Care and Daily Life’ survey, the first Europe-wide survey exploring the everyday impact of rare and complex diseases. This survey was a core aspect of the INNOVCare project, and provided a valuable snapshot of the current situation that patients and carers face across Europe.
- That a rare disease often has significant impact on the lives of both patients and carers
- Health, social and local services are often characterised by poor integration and lack of communication between providers
- Professionals within these services can have poor understanding of the needs of individuals with rare diseases
- Patients and carers feel poorly informed about their rights to different services
The INNOVCare pilot scheme
Another important arm of the INNOVCare project was a pilot scheme conducted in Romania. This enabled the development and evaluation of a person-centred, integrated care pathway spanning medical, social and education services. At the conference, Dorica Dan, NoRo Resource Centre for Rare Diseases, gave an overview of the pilot and presented the key results and lessons learned.
The pilot was essentially a ‘case management scheme’ in which an individual case manager coordinates between patients and carers, and various services. This means the case manager ultimately becomes a ‘one-stop shop’ for patients and carers.
Feedback from participants of the pilot illustrate the value such schemes, which enable coordinated and person-centred care, can have:
‘It is a terrible feeling of being so lonely and not understood and this case management answered to my needs.’ (Patient)
‘My case manager helped me to get my family back and to become more responsible for my care.’ (Patient)
Juliet Tisch, Centre for Social Innovation, and Peter Lindgren, Karolinska Institutet, then presented the social and economic benefits of the pilot scheme. This included:
- Patients feeling more empowered and informed about their rights
- Patients having increased confidence to communicate their needs and self-manage
- Reduced use of emergency services and hospitalisations
- Reduced burden on caregivers
Both Peter and Juliet emphasised the importance of further research into the benefits of similar interventions in the future, particularly in justifying changes to current practice.
Recommendations and resources
Based on the findings of the Project, INNOVCare partners have developed a series of EU-wide and national measures. These recommendations, officially announced at the final conference, aim to ensure the specific needs of individuals with a rare disease and those that support them are understood and met by the services involved in their care and support. Recommendations include:
- That the Work-life Balance Directive takes into account the specific needs of persons with rare diseases and their carers as well as of those with other complex chronic conditions and disabilities;
- That National Strategies and Plans for Rare Diseases include the provision of integrated care and services for people living with a rare disease
- The training of service providers, and sharing of good practice in health and social care
INNOVCare Project partners stressed that Europe-wide platforms, such as European Reference Networks, would be vital to the implementation and support of the recommendations.
The full set of recommendations can be viewed here.
The Project partners have also compiled a series of resources from the work carried out, and intended to support good practice in the future, which can be viewed here.
More information about the Project is available through EURORDIS.
Genetic Alliance UK would like to congratulate EURORDIS and their fellow INNOVCare partners on this impressive and important work. We hope it will do much to help raise awareness of the importance of person-centred, coordinated care for rare disease patients, and towards ensuring this becomes routine practice across Europe.