Correction to: RarERN Path: a methodology towards the optimisation of patients’ care pathways in rare and complex diseases developed within the European Reference Networks

Abstract BackgroundIn 2017, the European Commission has launched the European Reference Networks (ERNs), virtual networks involving healthcare providers across Europe. The aim of the ERNs is to tackle complex and rare diseases and conditions that require highly specialized treatment and a concentration of knowledge and resources. The ERN on rare and complex connective tissue and musculoskeletal diseases (ERN ReCONNET) is one of the 24 ERNs approved that aims to improve the management of Rare and Complex Connective Tissue and Musculoskeletal Diseases.ObjectiveThe RarERN Path methodology aims to create a single reference organisational model for patients’ care pathways which, if applied in different contexts, helps to ensure an improved, cost-effective and patient-centred equal care to rare and complex diseases.MethodsStarting from existing standard methods for the creation and elaboration of patients’ care pathways, a specific methodology was created in order to take advantage of the distinctive and peculiar characteristics of the ERNs. Specifically, the development of the RarERN Path methodology involved different stakeholders: health economists, clinicians and researchers expert in rare and complex diseases, communication experts, experts in patients’ involvement and narrative medicine and policy-makers.ResultsThe RarERN Path methodology foresees six consecutive phases, each with different and specific aims. Specifically, the six phases are represented by: Phase 1 - Mapping of existing patients’ care pathways and patients’ stories; Phase 2 – Design of an optimised common patients’ care pathway; Phase 3 – Consensus on an optimised common patients’ care pathway; Phase 4 – Key Performance Indicators (KPI) definition; Phase 5 – Refinement; Phase 6 – Pilot phase (optional).ConclusionThe application of RarERN Path to the different disease-specific and geographical contexts would help to ensure an improved, cost-effective and patient-centred equal care to rare and complex diseases across Europe as well as a possible tangible action towards the integration of ERNs into the different European healthcare systems.

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RarERN Path: a methodology towards the optimisation of patients’ care pathways in rare and complex diseases developed within the European Reference Networks

10.21203/rs.3.rs-16041/v1 ◽

2020 ◽

Author(s):

Rosaria Talarico ◽

Sara Cannizzo ◽

Valentina Lorenzoni ◽

Diana Marinello ◽

Ilaria Palla ◽

...

Keyword(s):

Healthcare Providers ◽

Complex Diseases ◽

Cost Effective ◽

Care Process ◽

Care Pathways ◽

Patient Centered ◽

European Reference Networks ◽

Reference Networks ◽

Organisational Model ◽

Disease Specific

Abstract Background In 2017, the European Commission has launched the European Reference Networks (ERNs), virtual networks involving healthcare providers across Europe. The aim of the ERNs is to tackle complex and rare diseases and conditions that require highly specialized treatment and a concentration of knowledge and resources. The ERN ReCONNET is one of the 24 ERNs approved that aims to improve the management of Rare and Complex Connective Tissue and Musculoskeletal Diseases.ResultsThe need to develop a specific methodology for the implementation of an organisational model for patients’ care pathways aligns with the mission of the ERNs to improve the care of rare and complex diseases in Europe. In this framework, ERN ReCONNET developed the RarERN Path methodology that is aimed at creating an organisational model for patients’ care pathways taking advantage of the unique setting of ERNs, represented by the large community of experts (researchers, clinicians, healthcare professionals, patients, health economists, hospital managers, etc.) involved in the Networks. The specific aim of RarERN Path is to provide a valid organisational model for patient-centered care in rare and complex diseases that enables the integration of the different stakeholders involved in the care process, and that adapts in a flexible way to different disease-specific and geographical contexts across Europe.The RarERN Path methodology foresees six consecutive phases that, if applied in different contexts, helps to ensure an improved, cost-effective and patient-centred equal care to rare and complex diseases. ConclusionThe application of RarERN Path to the different disease-specific and geographical contexts would help to ensure an improved, cost-effective and patient-centred equal care to rare and complex diseases across Europe as well as a possible tangible action towards the integration of ERNs into the different European healthcare systems.

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RarERN Path: a methodology towards the optimisation of patients’ care pathways in rare and complex diseases developed within the European Reference Networks

Orphanet Journal of Rare Diseases ◽

10.1186/s13023-020-01631-1 ◽

2020 ◽

Vol 15 (1) ◽

Author(s):

Talarico Rosaria ◽

Cannizzo Sara ◽

Lorenzoni Valentina ◽

Marinello Diana ◽

Palla Ilaria ◽

...

Keyword(s):

Connective Tissue ◽

Musculoskeletal Diseases ◽

Care Pathway ◽

Phase 1 ◽

Narrative Medicine ◽

Complex Diseases ◽

Cost Effective ◽

Care Pathways ◽

European Reference Networks ◽

Reference Networks

Abstract Background In 2017, the European Commission has launched the European Reference Networks (ERNs), virtual networks involving healthcare providers across Europe. The aim of the ERNs is to tackle complex and rare diseases and conditions that require highly specialized treatment and a concentration of knowledge and resources. The ERN on rare and complex connective tissue and musculoskeletal diseases (ERN ReCONNET) is one of the 24 ERNs approved that aims to improve the management of Rare and Complex Connective Tissue and Musculoskeletal Diseases. Objective The RarERN Path methodology aims to create a single reference organisational model for patients’ care pathways which, if applied in different contexts, helps to ensure an improved, cost-effective and patient-centred equal care to rare and complex diseases. Methods Starting from existing standard methods for the creation and elaboration of patients’ care pathways, a specific methodology was created in order to take advantage of the distinctive and peculiar characteristics of the ERNs. Specifically, the development of the RarERN Path methodology involved different stakeholders: health economists, clinicians and researchers expert in rare and complex diseases, communication experts, experts in patients’ involvement and narrative medicine and policy-makers. Results The RarERN Path methodology foresees six consecutive phases, each with different and specific aims. Specifically, the six phases are represented by: Phase 1—mapping of existing patients’ care pathways and patients’ stories; Phase 2—design of an optimised common patients’ care pathway; Phase 3—consensus on an optimised common patients’ care pathway; Phase 4—key performance indicators definition; Phase 5—refinement; Phase 6—pilot phase (optional). Conclusion The application of RarERN Path to the different disease-specific and geographical contexts would help to ensure an improved, cost-effective and patient-centred equal care to rare and complex diseases across Europe as well as a possible tangible action towards the integration of ERNs into the different European healthcare systems.

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RarERN Path: a methodology towards the optimisation of patients’ care pathways in rare and complex diseases developed within the European Reference Networks

10.21203/rs.3.rs-16041/v2 ◽

2020 ◽

Author(s):

Rosaria Talarico ◽

Sara Cannizzo ◽

Valentina Lorenzoni ◽

Diana Marinello ◽

Ilaria Palla ◽

...

Keyword(s):

Connective Tissue ◽

Musculoskeletal Diseases ◽

Care Pathway ◽

Phase 1 ◽

Narrative Medicine ◽

Complex Diseases ◽

Cost Effective ◽

Care Pathways ◽

European Reference Networks ◽

Reference Networks

Abstract Background In 2017, the European Commission has launched the European Reference Networks (ERNs), virtual networks involving healthcare providers across Europe. The aim of the ERNs is to tackle complex and rare diseases and conditions that require highly specialized treatment and a concentration of knowledge and resources. The ERN on rare and complex connective tissue and musculoskeletal diseases (ERN ReCONNET) is one of the 24 ERNs approved that aims to improve the management of Rare and Complex Connective Tissue and Musculoskeletal Diseases. Objective The RarERN Path methodology aims to create a single reference organisational model for patients’ care pathways which, if applied in different contexts, helps to ensure an improved, cost-effective and patient-centred equal care to rare and complex diseases. Methods Starting from existing standard methods for the creation and elaboration of patients’ care pathways, a specific methodology was created in order to take advantage of the distinctive and peculiar characteristics of the ERNs. Specifically, the development of the RarERN Path methodology involved different stakeholders: health economists, clinicians and researchers expert in rare and complex diseases, communication experts, experts in patients’ involvement and narrative medicine and policy-makers. ResultsThe RarERN Path methodology foresees six consecutive phases, each with different and specific aims. Specifically, the six phases are represented by: Phase 1 - Mapping of existing patients’ care pathways and patients’ stories; Phase 2 – Design of an optimised common patients’ care pathway; Phase 3 – Consensus on an optimised common patients’ care pathway; Phase 4 – Key Performance Indicators (KPI) definition; Phase 5 – Refinement; Phase 6 – Pilot phase (optional).ConclusionThe application of RarERN Path to the different disease-specific and geographical contexts would help to ensure an improved, cost-effective and patient-centred equal care to rare and complex diseases across Europe as well as a possible tangible action towards the integration of ERNs into the different European healthcare systems.

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Will European Reference Networks herald a new era of care for patients with rare and complex diseases?

European Journal of Public Health ◽

10.1093/eurpub/cku144 ◽

2015 ◽

Vol 25 (3) ◽

pp. 362-363 ◽

Cited By ~ 4

Author(s):

N. Azzopardi-Muscat ◽

H. Brand

Keyword(s):

Complex Diseases ◽

New Era ◽

European Reference Networks ◽

Reference Networks

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European Reference networks for rare diseases: what is the conceptual framework?

Orphanet Journal of Rare Diseases ◽

10.1186/s13023-017-0676-3 ◽

2017 ◽

Vol 12 (1) ◽

Cited By ~ 36

Author(s):

Véronique Héon-Klin

Keyword(s):

Conceptual Framework ◽

Rare Diseases ◽

European Reference Networks ◽

Reference Networks

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Will European reference networks benefit all EU patients with rare siseases?

Journal of Rare Diseases Research & Treatment ◽

10.29245/2572-9411/2016/1.1002 ◽

2016 ◽

Vol 1 (1) ◽

pp. 9-11

Author(s):

Sally Lynch

Keyword(s):

European Reference Networks ◽

Reference Networks

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Orphanet – Information, Education and Expert Centres for Rare Diseases / Orphanet – informovanosť, vzdelávanie a špecializované centrá starostlivosti o pacientov so ZCH

Acta Facultatis Pharmaceuticae Universitatis Comenianae ◽

10.2478/afpuc-2013-0002 ◽

2013 ◽

Vol 60 (Supplementum-VIII) ◽

pp. 10-15

Author(s):

L. Kovács ◽

E. Hegyi ◽

G. Nagyová

Keyword(s):

Rare Diseases ◽

National Level ◽

Quality Criteria ◽

Basic Data ◽

Current Status ◽

Paper Briefly ◽

European Reference Networks ◽

Reference Networks ◽

Centres Of Expertise

The paper briefly describes the role of Orphanet as an informational and educational source for rare diseases. Most attention is given to the Centres of Expertise and European Reference Networks. The authors suggest an easy procedure how to get the basic data about the readiness of the clinics to be recognised for Centres of Expertise at the national level. EUCERD recommendations on quality criteria for centres of expertise are introduced. The coordinators of the potential Centres of Expertise should be contacted and asked to fill in the questionnaire designed to check whether the centre matches the EUCERD recommendations or not. In order for the process to be transparent, the selection criteria of expert resources are listed on national website (www.orphanet.sk). The analysis of the questionnaires has to be carried out at the national level, to map the basic data about the current status. One questionnaire per department or clinic shall be filled in order to allow the evaluation. Clinics will be divided in two groups the ones which achieved the threshold and could be recognised as Centres of Expertise at the National level and the ones which need to be further monitored to reach the threshold.

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