4th-5th-6th February 2018

Scuola Superiore Sant’Anna, Pisa, Italy

Introduction

The second ERN ReCONNET plenary meeting took place on 4th, 5th and 6th February 2018 in Pisa, at the Sant’Anna School of Advanced Studies. 

The meeting focused on the following activities:

• Report and overview of the work done in the first year
• WP4, 1st year. Definition of IT environment.
• WP3, 1st year. Review of the work, definition of future steps
• Definition of tasks/activities and working groups
• ESAB: introduction to the project, involvement in different tasks
• Steering committee meeting
• WP8- Discussion on education
• Towards the 2nd year working programme: overview and kick off

Welcome speeches

Marta Mosca has briefly welcomed the participants and described the objectives of the meeting. Giuseppe Turchetti has introduced the Sant’Anna School of Advanced Studies and its international environment.

WP4 Working Groups

Marta Mosca has then overviewed the 5 years working plan of ERN ReCONNET and in particular the Work Package 4 Adaptation and definition of the contents of the central ERN IT Platform and environment. The first year of WP4 focuses on the co-design of It services (website) and e-Health tools.

The activities of the first year focused on the co-design of the website content and eHealth tools by target groups (clinicians and patients, caregivers and families) in order to identify the needs and expectations of the target groups.

The 3 tasks of the workshop related to the website and to eHealth tools were:

• Why do you bookmark a website? What are the reasons?
• Contents and characteristics that you expect to find in the ERN ReCONNET website
• eHealth tools: Do you think that the creation of new eHealth tools (wearable devices, mobile apps, registries etc.) on rare and complex Connective Tissue Diseases (rCTDs) would be useful?

If yes, which tool would you develop first?

Participants were divided into 3 working groups (WG):

Group A: patients, family members and caregivers. This group was composed of patients, family members and caregivers from different countries and different diseases. The feedback of this group is particularly crucial to better define the contents and the best structure of the section dedicated to patients.

Group B: ERN ReCONNET Health Care Professionals. This group was composed of HCPs representatives, Disease Coordinators and ESAB members. Their role was to identify the main needs of the HCPs already involved in the ERN ReCONNET.

Group C: non-ERN Health Care Professionals. Participants involved in Group C were asked to identify themselves with Healthcare Professionals not involved in ERN activities and therefore not necessarily aware of the project.

All working groups agreed on the necessity to create a user-friendly website that allows all users to find information quickly and that enables rapid navigation in the different sections.

The concept of the website gathered agreement from all participants and it was agreed that the ERN ReCONNET website could serve as the main informative platform on rCTDs not only for specialists and patients but also for other stakeholders such as general practitioners, nurses, regulators and payers. The website could also help in disseminating the existence of the Clinical Patient Management System (CPMS) and in offering a direct link to the ERN IT Core Services for ERN members (HCPs and Patients).

With regards to the task dedicated to eHealth, the results of the Working Groups highlighted the necessity to create a harmonised EU-wide registry and a mobile app dedicated to rCTDs.

Report on Steering Committee decisions, discussions and approvals

Marta Mosca reported the proposals of the Steering Committee, that convened during the Working Group 4 session.

First year work plan overview: state of the work, criticalities and future steps

Marta Mosca provided an overview of the 7 Work Packages of the first year and the results obtained.

WP Number	WP Title	Start month	End month
1	Coordination and Management	1	60
2	Evaluation	1	60
3	Development of standard clinical guidelines and practice	1	36
4	Adaptation and definition of the contents of the central ERN IT platform and environment	6	54
5	Economic and organizational issues	7	60
6	Communication and Dissemination	1	60
7	Networking and sustainability of the ERN	7	60

Participants were asked to send the ERN ReCONNET event participation report form in order to prepare the deliverable for WP6.

A Newsletter has been developed for the first year of the Network and regular issues will be released during year 2.

WP3: state of the work and results, discussion and future steps

During the first year the Network has collected important results on the state of the art of clinical practice guidelines for the disease of the Network.

The Disease Coordinators presented the results of WP3 for the first year which included a report on the existing guidelines and unmet needs identified for each disease.

Discussion of WP3 future steps

The discussion focused on the next steps to be done in the different diseases. All disease groups have agreed to involve more actively Patients Representatives, especially in the definition of unmet needs.

ERN ReCONNET Second Year Grant Agreement overview. ERN ReCONNET tasks and Working Groups

The Second Year Grant Agreement will comprehend all the 10 WPs foreseen for the 5 years of the ERN ReCONNET:

WP number	WP Description
WP1	Coordination and Management
WP2	Evaluation
WP3	Development of standard clinical guidelines and practice
WP4	Adaptation and definition of the contents of the central ERN IT platform and environment
WP5	Economic and organizational issues
WP6	Communication and Dissemination
WP7	Networking and sustainability of the ERN
WP8	Education
WP9	Ethical and legal issues, and privacy
WP10	Data integration and sharing

For each WP the team has been proposed and the main tasks have been identified. After the meeting all information will be uploaded into the ERN Collaborative Platform. In addition to the WPs work, the Clinical Patient Management System (CPMS) will be one of the main focus of the Network, and all HCPs have been encouraged to request access to the CPMS and start discussing clinical cases.

Focus on WP8 Education

The WP8 activities of the second year of ERN ReCONNET will focus on:

• the collection available patients’ information and brochures and adaption/development new ones where needed (patients, family members and caregivers);
• the definition of educational strategies (identifying priorities and final users such as GPs, nurses, healthcare professionals, specialists, etc).

An innovative approach would be to have a more general course on CTDs and a second course developed for specific diseases. Education on transitional care has been identified as one the most important issue to address, and therefore a collaboration with ERN RITA has been proposed.

Next events

The next ERN ReCONNET meeting is planned in November 2018, a Doodle will be sent to HCPs to select the exact date.

The Steering Committee will convene during the EULAR annual meeting.