1. JARC – Work Package 5 Assuring Quality of Care 12 month Report
Simon Oberst FCA, Chair of the OECI Accreditation and Designation Board
Milano, 16 October 2017

2. WP5 – Original Main Tasks
Mapping the existing networks and CoEs
Survey and investigate existing quality assurance programmes for rare cancers (and other cancer networks) from around the world
Design systems-based standards for all families of rare cancers in networks
Design QA processes – accreditation/audit/improvement plans

3. Core team in OECI for WP5
Aviano – Prof Paolo de Paoli and Lucia da Pieve
IKNL: Dr Annemiek Kwast; Dr Jan Maarten Van der Zwan; Harriet Blaauwgeers
Cambridge – Simon Oberst and Dr Tobias Janowitz

4. Our partners for WP5 INSERM/Orphanet EURORDIS ECPC
ICO Catalonia, Spain
Cancer Society of Finland
Institut National du Cancer, France
OOI, Hungary
University of Pecs, Hungary
MoH Czech
UBB, Romania
INT (of course!)
Liaise with SIOPE

5. Tasks in Year 1 Mapping the existing networks and CoEs
EURACAN and EuroBloodNet did the work for us!
It was felt to be unnecessary to do a huge exercise trying to map all other centres of excellence not part of EURACAN and Eurobloodnet

6. What we achieved in Year 1
2. Survey and investigate existing quality assurance programmes for rare cancers (and other cancer programmes)
We did a literature review on Effective Health Networks
We made a survey of Quality Assurance Systems in common use in Cancer Hospitals/Institutes in EU Member States
We analysed the quality and scope of those QA systems and compared them to the ERN compliance programme
Deliverable: Survey and shortlist of the best existing QA systems as a basis for developing standards for JARC
Partners working on this: OECI

7. What we have achieved in Year 1
We have begun to design the framework quality standards for networks for a new system:
Compatible with ERN compliance requirements
An expansion of those requirements (for cancer)

8. Workshop objectives - yesterday
1. To gain consensus around the idea of the hierarchy of the quality standards (pyramid)
2. To gain consensus around the chapter headings for standards in tiers 1 and 2
3. To invite and gain participation from other JARC members and our associate partners
for the WP5 around specific tasks.

9. to organisation of networks (e.g. governance)
Tier 1:
Standards related
to organisation of networks (e.g. governance)
Tier 2:
Standards related to networking in all rare cancers: e.g. Virtual MDTs, clinical implementation, referrals and diagnostic pathways
Tier 3:
Specific standards relating to individual families of rare cancers.
e.g. specific volume criteria and diagnostic and treatment methods (but not to the level of clinical guidelines).

10. Tier 1 – ORGANISATION OF THE NETWORK
Planning and Strategy
Boards; periodic review, cooperation agreements; implementation of evidence based change
Governance on clinical guidelines
Policy making (network level) and research agenda (common topics)
Resource allocation
Sustainability: Funding and Education
GOVERNANCE
Principles and Capacities around:
Care Provision – continuity of care
Social and Financial needs
Patient information, education and support
PATIENT-CENTREDNESS
Teleconferences or online system (such as the ERN CPMS)
Data acquisition and monitoring
Shared certified DBs and registries
Inventory of the network’s diagnostic and treatment infrastructure and distribution
INFRASTRUCTURE
Monitoring
Internal auditing systems, QA systems in place
Benchmarking between networks and within the network, performance and outcomes measurement and monitoring
PDCA cycle
QUALITY CONTROL
Transparency
Dissemination of results and reports
Involvement of key-stakeholders (especially patient representatives) in the evaluation and planning, relationships with stakeholders ( big pharma, health authorities)
ACCOUNTABILITY
* Tier 1: data useful for decision making at network level: e.g. volumes, dashboards of indicators,...; clinical data management should be tackled in tier 2

11. Research and Education
Chapters Tier 2 – NETWORKING IN ALL RARE CANCERS (Clinical implementation)
Tumour boards and standard of care implementation
Referral systems among the HCPs
Shared research project management
Induction of new members
Cross border finances
Management
Clinical data exchange systems – use of the ERN CPMS?
Teleconsulting infrastructure
MTD recording system
Shared certified DBs and registries, virtual biobanks
Communication
Composition of members of the MDTs
Competences assessment and monitoring
Documentation and communication for care delivery
Decision making
Standardize care/equal access for diagnosis and treatment
Compliance with (common) guidelines
Provision of competent care team
Assurance of minimum requirements for facilities and treatments
Care delivery
Research: Clinical Trials shared among the network partners
High quality (practice changing) publications
Training: Health care professionals
Research and Education
* General requirements: specific techniques should be included in Tier 3

12. Research and Education
GOVERNANCE
Management
Tier 1:
Standards related
to organisation of networks (e.g. governance)
PATIENT-CENTREDNESS
Communication
INFRASTRUCTURE
Decision making
Tier 2:
Standards related to networking in all rare cancers: e.g. Virtual MDTs, clinical implementation, referrals and diagnostic pathways
QUALITY CONTROL
Care delivery
Tier 3:
Specific standards relating to individual families of rare cancers.
e.g. specific volume criteria and diagnostic and treatment methods (but not to the level of clinical guidelines).
ACCOUNTABILITY
Research and Education

13. Tasks in Year 2
According to the chapters agreed, we will design a first draft of standards by 30 June 2018.
Avoid duplication with clinical guidelines – not setting minimum numbers of treatments ourselves, but referring that to ERNs
Confer with the quality leads of EURACAN and Eurobloodnet and PaedCan
Design standards which can apply in every Member State
Be aspirational as to high quality and consistent with ERN requirements
We will do a first draft of these standards by 30 June 2018
We will go on to design a compliance and improvement framework
Deliverable: World-Class JARC Standards (M30)
We will plan a consensus meeting on the draft standards involving all partners in M21 – June 2018

14. RareCareNet expert group based on EUCERD quality criteria for CoEs
Ensure appropriate clinical management according to evidence based guidelines and based on a patient
centered multidisciplinary approach
Develop/support patient pathways nationally and cross border
Develop clinical guidelines and good service guidelines together with patients advocacy groups
Guarantee a learning environment by promoting training and continuing education activities to
support health care providers to bring health care closer to patients
Foster clinical, translational, and epidemiological research including epidemiological surveillance in
collaboration with population-based cancer registries
Empower patients by providing information adapted to the specific need of patients and family from
different culture and ethnic groups
Possess an e-health platform to process and share information, biomedical images or clinical samples
supported by enough human, structural and equipment resources
Have a transparent quality assurance system including evaluation of the service provided including
volume of relevant activities
Ensure collaboration on all above points with other centers nationally and internationally

15. Some other overarching principles for Rare Cancer Networks
Expertise travels rather than the patient
Referral and diagnostic pathways should be clearly defined, assuring continuity and quality of care, information and support for patients and families.
Patient involvement at all levels
Key involvement in clinical trials, sample collections and bioinformatics
There should be great communications systems throughout the network – common platforms, or connectivity; videoconferencing

16. Use of the Guidelines for Rare Cancer Networks (Endpoint)
Recommended as compulsory for the 2 adult cancer ERNs
Advisory for National Rare Cancer Networks (link with WP10 Policy)
For the ‘spokes’ within a hub and spoke network – the emphasis should be on the consistency of the network and access from the patient viewpoint

17. Revised Milestones

18. Questions?