European Reference Networks (ERNs) are networks involving healthcare providers across Europe. Their aim is to tackle rare and complex diseases and conditions that require highly specialised treatment and a concentration of knowledge and resources.
The European Reference Network for rare and complex connective tissue and musculoskeletal diseases ERN ReCONNET involves 26 HCPs from 8 different EU countries and covers the following diseases:
- Systemic Sclerosis/Scleroderma (SSc)
- Mixed Connective Tissue Diseases (MCTD)
- Idiopathic Inflammatory Myopathies (IIM)
- Anti-phospholipid syndrome (APS)
- Undifferentiated Connective Tissue Diseases (UCTD)
- IgG4 related diseases (IgG4)
- Relapsing Polychondritis (PC)
- Systemic Lupus Erythematosus (SLE)
- Sjögren Syndrome (SS)
- Ehlers-Danlos Syndromes (ED).
The network should deliver a patient centered care and therefore patient organizations play a crucial role. Patients organizations play a crucial role in the definition of patients needs in all the aspects covered by the network: early diagnosis, monitoring, access to care, side effects monitoring, therapeutic opportunities, teaching and education and in the definition of tools for patients empowerment in the management of their disease.
Patient will contribute to the Board of Network to give the opinion and views of the patient groups on all relevant aspects of the network strategy, policy, organization, processes. Patients will have representatives in disease specific clinical committees, committee on registries, committee on standard of diagnosis and care, committee on clinical trials, committee on information, etc.
The patients representatives will:
- advise care is patient-centred and respects patients’ rights and choice,
- promote and encourage a patient-centric approach in both delivery of clinical care, service improvement and strategic development and decision-making,
- give advice on transparency in quality of care, safety standards, clinical outcomes and treatment options,
- ensure that processes to address all ethical issues and concerns for patients are in place, balancing patient and clinical needs appropriately,
- propose methods for feedback and evaluation of patient experience,
- contribute to the development and dissemination of patient information, policy, good practice, care pathways and guidelines.
In addition, patients will have a role in reviewing the performance of the ERN by receiving and reviewing quality indicators, access times to diagnostic and treatment, clinical outcomes of diagnosis and treatment, providing patient perspective on the application of personal data rules, compliance of information consent and management of complaints, contributing to the research, identification of expert centres to join the ERN, either as a full member and an affiliated partners, evaluating how the ERN act on feedback from patients, through European Patients Advocacy Groups, patient organisations, surveys.
General European Reference Networks Webpage: https://ec.europa.eu/health/ern_en