For Professionals

Working Groups

Strategic areas have been identified in order to comply network and achieve its vision:

 

 

 

WP Patient Healthcare:

Patient pathways, cross borders and multidiciplinary approach

Coordinator: Esteban Frauca

Technical Director: Alistair Baker – Kings College London

 

Objectives

  • Ensure equality and transparency of access and care
  • Promote safe and quality care for all patients throughout the EU
  • Provide multidisciplinary care

 

Expected outcomes

Cross-Border Patients access, in a quick and efficient way, the care provided by the network through the physician responsible for the patient The Network:

  • has established the necessary patient pathways for case management and care planning
  • uses available ITC shares knowledge in order to provide the best care
  • has implemented guides/protocols to support diagnosis, treatment and continuity of care
  • has identified the necessary highly specialised diagnostic methods
  • and centres of expertise for caring for transplant patients and has the mechanisms to share patient´s samples and information
  • Information about the cross-border network pathways and multidisciplinary teams and their outcomes are available and public.

 

 

Contact for more information

WP Clinical Guidelines

 

Coordinator:Antonio Carcas

Technical Director: Lorenzo D´AntigaOspedale Papa Giovani XXIII (Palermo)

 

 

Introduction

Clinical decisions are made under uncertainty. This is especially so in rare diseases as transplantation in children. However, even in these situations, the development of clinical practice guidelines (CPG) is an essential tool for improving clinical care and to facilitate knowledge acquisition from routine practice as well as for the development of formal clinical investigation. All these will reduce uncertainty in clinical practice.

The development of CPG will be done in a systematic and previously agreed way between all stakeholders.

Objectives (1st yr)

  • SOPs detailing requirements of the CPGs working group and advisory group and patients’ subcommittee.
  • Publication of constitution of CPG advisory group, methodology group and patients network
  • Publication of constitution of executive group and selection of members for program management, research and information and administration and dissemination sub-groups
  • Writing of SOP on procedure for CPGs proposals by stakeholders.
  • List of formal clinical guidelines centered on the different aspects of transplant activities available within the network.
  • SOP on transparency policy and a clear policy of management of conflict of interest (see objective 6.3.2).
  • List of preferred patient centered outcomes (pco).
  • Core of clinically relevant questions to be initially addressed by the CPGs and development of CPGs.
  • SOPs about constitution of CPGs sub-groups and methodology for the elaboration of CPGs (based on AGREE)

 

 

Contact for more information

WP Quality and Safety

 

Coordinator: José Jonay Ojeda

Technical Director: Lars WennbergKarolinska

 

 

Introduction

  • Effective quality management at ERN level must recognise the contributions and the needs of all partners in the process, from the medical experts and care personnel, to the patient and family members, the analysts and interpreters of results
  • To ensure that the best standards of care are followed by all healthcare providers, the Network quality and safety management program will focus on five main lines

o Scientific-technical quality

o Perceived quality by patients, family and relatives

oHealth services quality and HCPs outcomes management

Objectives (1st yr)

 

  • Guide on the potential quality management schemes to improve standards of network quality.
  • List of services and diagnostic technics certified or accredited across the network
  • Global Process map
  • Structure, Process and outcome indicators and standards
  • Quality Management procedures
  • Risk map and actions to mitigate, safe practice.
  • Recommendations on quality standard schemes
  • List of relevant indicators and expected outcomes, its definitions and time to collect them: document for discussion and comments and final list.
  • Monitoring and evaluation plan: initial proposal and final agreement
  • SOP for monitoring indicators
  • Management information System
  • Review and proposals for improvement
  • Outcomes and foreseen actions dissemination
  • Patient experience tool: Questionnaire
  • Measurement plan
  • Patient’s Experience report
  • Improvement Plan established
  • Complaints Operating Procedure

 

 

Contact for more information

WP Education and Training 

 

Coordinator: Antonio Pérez-Martínez

Technical Director: María Francelina Lopes – Centro Hospitalar Coimbra

 

 

Introduction

Paediatric transplantation (PT), like solid organ transplantation (SOT) or haematopoietic stem cell transplantation (HSCT), is rare and high-complexity procedure that requires a standardised approach to guarantee equal access and safe patient care. In fact, we may consider PT to be a subspecialty within the field of transplantation. The unique features of PT, including a low number of cases, young age and low weight, immune system immaturity and plasticity, transition from childhood to adulthood and long life expectancy, require the transfer of specific knowledge, techniques and innovative medicine in paediatric patients. All of this makes PT a procedure without a common standard or PT care quality regulations. However, in order to maintain ERN competency and expertise, it is necessary to develop a common education and training strategy that centres on these topics.

Objectives (1st yr)

  • Gap analysis
  • Education and training Annual Programme/Plan
  • Educational materials and means
  • Educational and Training activities accredited
  • Systematics for the identification of continuous training needs
  • Training and educational activities identified in the Plan
  • Follow-up and feedback of training and educational activities
  • Annual Report on education and training activities
  • Review of the plan and incorporation of new items (e.g. research results)

 

 

Contact for more information

WP Networking

 

Coordinator: Paloma Jara

Technical Director: Jaap BoelensChildren Hospital Utrech

 

 

Introduction

The objectives of ERNs include disseminating and exchanging information with other national centres, networks, Associated National Centres and Collaborative nation Centres chosen by Member States with no member of a given Network, centres of expertise or other stakeholders both  at the national and international level, establishing plans and communication tools to support mutual collaboration.

Likewise, the network must be able to identify the information needs of patients/patient associations

and must be able to act as a source of information for them.

Along these lines, TRANSCHILD’s strategic plan has established two action plans to ensure the

fulfilment of these objectives: networking and knowledge management.

Objectives (1st yr)

Raise awareness concisely, directly and accessibly regarding all activities in order to encompass all stakeholders:

  • Identify all stakeholders
  • Identify the needs of each type of stakeholder, including patient associations
  • Establish the Patient Committee and the participation mechanisms for patients associations
  • Involves patient associations in the network
  • Implement guides and protocols for action
  • Disseminated and shared information about the activity through the established channels
  • Implement feedback mechanisms for continued improvement

 

 

Contact for more information

WP Knowledge

 

Coordinator: Francisco Hernández

Technical Director: Sophie BranchereuHopital Bicetre-París

 

 

Introduction

Successful organisations are often described as “learning organisations” made up of “knowledge workers” who continually learn and apply knowledge to changing situations. Knowledge management is a systematic and organised approach to making relevant knowledge visible and widely accessible so that learning can take place. Knowledge management includes identifying and mapping existing intellectual assets as well as creating new knowledge within the organisation. To be successful, an organisation’s knowledge management process must be reflected in its culture, strategy, policy and practice.

Knowledge is an abstract concept, difficult to translate to the Health Systems environment. However, in recent years, knowledge is considered the key value. The value of human resources depends on the knowledge of individuals. This knowledge includes both “know-what” and “know-how”. Knowledge management (KM) is essential in order to get the right knowledge to the right person at the right time.

Objectives (1st yr)

  • Support tools for knowledge management
  • Knowledge retention
  • Knowledge development
  • Knowledge sharing
  • Knowledge use and evaluation

 

 

Contact for more information

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