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Table 2 Assessment of the three options for a potential network o rare Communicable diseases linked to Mobility and Globalisation

From: European expert network on rare communicable diseases and other rare diseases linked to mobility and globalisation focused on health care provision (EURaDMoG): a feasibility study

  Maintaining Status Quo Creation of a European expert network (EEN) Creation of a new ERN (ERN) Other pending aspects to be explored
Operational criteria
Establishment of the network +
There are three existing networks.
There are members from non-EU/EEA countries in the networks.
They comply the minimum of HCP and countries required.
The main goal of the networks is not exclusively focused on Health care provision.
+
The EC can set the basis but there are not currently clear mechanisms to be supported by EC (Health policy platform could be one).
No clear mechanism on who should establish the expertise of the HCP.
A minimum of HCP identified
The HCP criteria could be more flexible compared with an ERN.
It may partially overlap the focus of those existing networks.
+ to ++
The EC and the Member States set the basis.
The minimum of HCP identified.
Health Care Provider status might make difficult the participation and enrolment of critical centres.
It may partially overlap the focus of those existing networks.
The proposed number of required number of participants/ countries needs to be reviewed and validated
Thematic areas to be covered by the network: ++
All networks are focused on Tropical and Travel related diseases which are rare communicable diseases linked to Mobility and Globalisation (one of them with an exclusively focus on viral infections).
++
The network will be created based on the findings, and needs in terms of rare CD linked to Mobility and Globalisation.
++
The network will be created based on the findings and needs in terms of rare CD linked to Mobility and Globalisation.
 
Disease or conditions covered + to ++
The existing networks already cover most of the diseases.
In TropNet and EVDLabNet, there is not a list of diseases.
++
The diseases to be included can be according to the detected needs.
The list may not be a closed list since there are potential new public health threats for the EU/EEA countries in the future.
++
The diseases to be included can be according to the detected needs.
The list may not be a closed list since there are potential new public health threats for the EU/EEA countries in the future.
 
Improving the Health Care Provision +
TropNet has a forum for discussion of clinical cases activity although ensuring the compliance with the EU data protection policy is currently a challenge.
EVDLabNet has a directory of Laboratory capacities to improve the access to rare diagnostics tests.
+
This criterion may be feasible depending on the legal basis and cross-exchange mechanisms of the network although ensuring compliance with the data EU protection policy may be challenging.
++
This is the main guarantee of ERN, as well as its main goal, to ensure a better access to highly specialized healthcare.
 
Data registry 0 to +
TropNet and EuroTravNet do report number of cases yearly as a sort of surveillance activity but do not register clinical cases.
The existing networks share data, but cannot be held responsible nor exchange personal patient data in a secure, safe and legally binding environment in compliance with the data EU protection policy, which is currently a challenge.
+
It is difficult to assess the feasibility, as it will depend on the rules, data definition and legal framework of the network.
This criterion may be feasible depending on the legal basis and cross-exchange mechanisms of the network although ensuring compliance with the EU data protection policy may be challenging.
++
This is the main guarantee of ERN, as well as its main goal, to ensure a better access to highly specialized healthcare.
ERNs register clinical cases for discussion and for a training purpose (CPMS system).
In addition, another ERNs’ developments include online platform to safely and ethically share data, under the support of the EU in terms of technological tools enabling the sharing.
 
Governance, coordination and management of the network 0 to +
Existing networks have different governance and coordination structure.
The networks might overlap in some aspects. It is currently foreseen to develop more collaborations.
Members of the networks may not necessarily be HCP.
Patients’ associations are not involved in these networks.
+
A new network will mean new structures and roles, but it does not have to be too complex.
It will depend on the organ (not necessarily the EC) to support the network.
Patient’s associations could potentially be involved.
++
The governance while complex is aspect of the ERNs has been already established.
Patient’s associations could be potentially involved.
 
Patient care + to ++
The networks do not have guidelines to promote quality and safe patient care.
Networks also provide information for patients/relatives within the network.
EVDLabNet promotes the sharing of laboratory capabilities.
TropNet has available a repository with information on orphan drugs available in the centres belonging to the network.
No network has developed ICT-tools that could be developed to provide care, access to expertise, and support the development, sharing and spread of best practice. (E.g. Telemedicine, tele-expertise or remote consultation).
Patient care is improved through continuous exchange of knowledge.
Few centres from East European countries are involved in the networks.
+ to ++
The specialization of the network should enable the creation of formally accepted professionalized guidelines for patient care.
The involvement of HCP will depend on the Governance of the network
Discussion of individual clinical cases could be proposed but the maintenance will be a challenge.
ICT tools will depend on available funding.
Most HCPs identified are from Western European countries. Efforts should be done to include more HCP from East European countries.
++
The specialization of the network should enable the creation of formally accepted professionalized guidelines for patient care. One of the key function of the ERNs is to standardize care treatment, and the involvement of HCP directly connected to patients will ensure the direct translation of improved treatments.
A forum for discussion of individual clinical cases will be proposed.
ICT-tools could be developed to provide care, access to expertise, and support the development, sharing and spread of best practice. (E.g. Telemedicine, tele-expertise or remote consultation).
Most HCPs identified are from Western European countries. Efforts should be done to include more HCP from East European countries.
The network complies with the legal framework of the EC in providing Health Care.
The role and involvement of patients within the network needs to be clarified.
Continuous education, training and development. ++
Activities related to continuous education and training are currently being conducted (seminar, scientific meeting, conferences...).
They are very close to the professional needs, as facilitated by the exchange and informal atmosphere.
+
These activities would be very close to the professionals needs, and targeted to a very specific field. Depending on the resources available, they will be implemented more easily.
++
These activities would very close to the professionals needs, and facilitated by the exchange of information on the official online platforms.
Patients’ education material are promoted by ERN.
Training and educational activities are limited or not for members of the network.
Research activities of the network. ++
The health professionals already contribute to research by developing R&I projects together, including clinical trials, (particularly TropNet).
?
The creation of the network itself is part of an R&I process.
The founders will need to decide the relevance of the research for the activities of the network.
+ to ++
The main objective of the ERNs is to improve healthcare services, and the research activities, although secondary, are encouraged through the consortium, and the individuals.
Time is a constraint for clinicians involved.
If external funding to fund research is needed.
The amount of time to be dedicated for research by clinicians
Good practice, outcome measures and quality control measures for the network 0 to +
Although the networks promote the exchange of good practices, it is not mandatory to follow up and monitor the concrete impact of the exchanges, and the uptake of new/improved guidelines.
Cross-border collaborations to improve the health care provision have been already implemented (e.g. EVDLabNet laboratory capacity sharing or TROPNET – information access to Orphan drugs).
There is not a defined quality control planning with clear objectives and measurable indicators for monitoring and evaluation, particularly regarding the compliance of the access to medical records and clinical information with the EU regulations.
+
Through the formalisation of the network, a set of outcome measures and monitoring should be set, and agreed by the founders, especially to justify costs and impact, and obtain funding for their activities.
However, to assure the compliance of the access to medical records and clinical information with the EU regulations will be challenge to create and maintain a system to assure the confidentiality.
The network could also create a standard procedure for obtaining consent form.
++
ERNs are monitored and controlled by both the HCP and the funder (DG-Sante). A series of Key Performance Indicators (KPI) have to be established, and their outcomes and impact is measured.
ERN requires a quality control planning with clear objectives and measurable indicators for monitoring and evaluation, particularly regarding the compliance of the access to medical records and clinical information with the EU regulations.
The network would also create a standard procedure for obtaining consent form.
Define the set of Key Performance Indicators to ensure monitoring and impact driven approach.
Multidisciplinary approach +
The existing networks have a very open approach towards multidisciplinary collaboration, particularly EuroTravNet.
No clear rules within the networks on the openness towards other disciplines is established.
?
The founders will need to decide the relevance given to multi/trans-disciplinary approach, within the scheme decided and the concrete objectives/goals of the network.
++
ERN will ensure a multidisciplinary approach to treat the diseases/ affectations at the core of the network. There is also 24 other ERNs, which meet and exchange at least on a bi-annual basis, summing up to the concrete specificities of each one of them.
Explore how to add social and gender approach to the different networks.
Networking and collaboration + to ++
Networks are already established, and although collaboration is well engaged, both within and towards other networks, it is necessary to establish it specifically on Health Care Provision.
No official collaborations with other disciplines have been established (blood banks, transplant or antenatal care units among other).
+
Although based on existing partnership, and related centres, the general networking and collaborations towards external players would have to be developed.
+ to ++
The general networking and collaborations towards external players would have to be developed.
However, collaboration with other ERNs may be facilitated through the ERN structure.
Define better priority lines of collaboration.
Funding and sustainability criteria
Funding sources 0 to +
Networks are already functioning, although with low or non - financial resources.
EVDLabNet is funded by the ECDC.
Private funding sources: EuroTravNet is currently funded by private institutions (International Society of Travel Medicine and the Instituts Hospitalo-Universitaire Méditerranée Infection Foundation, Marseille).
TROPNET is not funded.
?
Important funding is needed to create a network.
The feasibility is very much depending if a special funding line is put in place to support the new structure or if the sources have to be identified and obtained through standard competitive processes.
++
To start the activities, an ERN could receive resources from EU Health programme.
A call for a new ERN would provide the necessary funding to start the activity.
Funding sources need to be available in order to start new activities, or consolidate those already existing.
Sustainability analysis of the network 0 to +
For now, networks have been sustainable, as shown on their existence overtime, and some key collaborations or merger are sought for.
It is unclear though how sustainability is foreseen over time if networks wish to grow and to strengthen the activities focused on Health Care Provision.
?
To ensure sustainability should be part of the basis of the new network. If there is a possibility to get the funds, a sustainability strategy should be put in place, through the engagement of the partners.
+ to ++
Sustainability is a key aspect of the ERNs, although for now, the experience is too recent to have a concrete model (publicly funded, through European or National schemes) that can be replicated for this new ERN.
It is unclear yet how they will become self-sustainable overtime.
Define the basis of self-sustained network, ensure sustainability through multiple funders, but also through clear and set engagement of the stakeholders involved.
  1. Full note: In the assessment of each scenario, each criterion was rated once for the overall network. Each criterion has been graded in the following way: “0” The scenario proposed does not fulfil the criterion; “+” The scenario proposed fulfil the criterion with limitations; “++” The scenario proposed fulfils the criterion; “?” Difficult to assess, (for the variables and knowledge limitations on the aspects assessed)