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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
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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
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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
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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
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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
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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
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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)
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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.
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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).
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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
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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
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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
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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
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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
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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
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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
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Revised Milestones
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Questions?
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