ERN PATIENT PERSPECTIVE Craniofacial e PAG Craniofacial ERN

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ERN PATIENT PERSPECTIVE Craniofacial e. PAG

ERN PATIENT PERSPECTIVE Craniofacial e. PAG

Craniofacial ERN : Patient Resource 2

Craniofacial ERN : Patient Resource 2

ERN Blueprint for Patient Involvement Input into ERN Board: • Identify potential partners and

ERN Blueprint for Patient Involvement Input into ERN Board: • Identify potential partners and existing stakeholders • Strategic planning including expand network scope and coverage • Monitors the activity, outcomes, and initiatives of the Network • Established mechanisms to hear from and incorporate the voice and opinion of patients and families • Develops and provides access to information adapted to the specific needs of patients • Standardised common patient experience tool • Improve the safety and quality of care base on patients experience f o e Data Sharing: • Promotes and/or facilitates the use of information and communication technology • Virtual consultation and share expertise with local hospitals nc e d h i v : E roac 1 /2 pp 0 2 d A 0 2 Training & Education e r Knowledge Generation & in Specialist Advice e w Dissemination ed o t a p lu Em a v e d & e r tre e ill b Cen Research Activities Research • Set research priorities • Supports collaborative research • Disseminate research project information and results • Recruitment to clinical trials and studies • Shared registries and databases w s RN E t n ie t a P Knowledge Generation & Dissemination • Establish patient pathways and cross-border pathways based on patient needs • Develop, disseminate and implement guidelines and protocols • Review and disseminates expertise, best practice and evidence • Discuss new treatments, therapies, and health care technologies Training & Education • Provides education and training • Share experience, exchange knowledge and best practice and expertise within ERN, between ERNs and wider community Target Improvement s in Rare Diseases Patient Care • Inform patients and families about patient pathways • Disseminates information on patient safety standards and safety measures • Enabling reporting possible safety incidents or adverse events 3 Source: EC AMT Operational Criteria for Networks

Patients as a ‘Patient Resource’ invest in ERN Patient, clinicians and researchers collaboration will

Patients as a ‘Patient Resource’ invest in ERN Patient, clinicians and researchers collaboration will be the deciding factor of the success of ERNs. Four fundamental functions of patient representatives: • Unique knowledge or personal experience of a specific disease • Only stakeholders who hold a holistic view of the whole process; only patients have a stake in every stage of the research and healthcare pathways. • Only ones who can ask anything, as they have often the most relevant and Insightful questions that should be asked and are often not. • Skilled and experienced from other sectors, outside the medical/research field

Success of Patient + Clinical Partnership Patient representatives were co-founders, co-authors, co-chairs and equal

Success of Patient + Clinical Partnership Patient representatives were co-founders, co-authors, co-chairs and equal partners in making ERNs a reality for all !!! • Groundswell of collaboration in the rare disease community: • 24 European Reference Networks (ERNs) linking >300 hospitals and 900 expert centres • 24 European Patient Advocacy Groups (e. PAG) of >300 patient organsations & <1000 e. PAG member organisations European Patient Advocacy Groups are: 22/11/2020 • Forums to optimise involvement of patients • Aligned with RD ERN scope • Patients are voting Members of all ERN Boards & >150 Disease Specific Network Committees 5

European Patient Advocacy Group : Craniofacial ERN Workstreams ENT Disorders Craniofacial Cleft lip palate/odontologic

European Patient Advocacy Group : Craniofacial ERN Workstreams ENT Disorders Craniofacial Cleft lip palate/odontologic disorders 22/11/2020 e. PAG Representative • Thomas Luck • Sara Perez • Sandra Mösche • Gareth Davies • Thomas Luck Patient Organisation 6

e. PAG Role & Responsibilities Network Board Level: • • Representing the voice of

e. PAG Role & Responsibilities Network Board Level: • • Representing the voice of the patient community within ERN ensuring (and being assured) the needs of people living with a rare disease are included in the strategic and operational delivery of the network, and to; Create a bridge between the ERN and the patient community, ultimately to improve access to high quality diagnosis, care and treatment. Disease Specific Level: • • • Advise on disease specific activities and projects and engage with the appropriate patient communities Contribute to the development of patient information, treatment policies, good practice guidelines and care pathways Support the network to dissemination of information and communication to the wider patient community Contribute to the development of research and research priorities Provide advice on ethical issues and data protection on the application of personal data rules, compliance of information consent and management of complaints

Our Strategic Priotisies … . . . what success looks like! 8

Our Strategic Priotisies … . . . what success looks like! 8

Our Strategic Prioritises Every child born with a cleft or craniofacial condition in Europe

Our Strategic Prioritises Every child born with a cleft or craniofacial condition in Europe must have the opportunity of realising their full potential Patient’s Strategic Prioritises: • Improve equity in access of diagnosis, care, treatment and follow-up. Promote interdisciplinary working and dialogue to inform treatment decisions • Identify best practice and promote implementation of clinical protocols and guidelines in every Member States • Increase prioritisation of cleft, craniofacial and rare ENT conditions for research funding and improve pace and impact of research • Identification and visibility of expert surgical centres for cleft, craniofacial and rare ENT conditions in each country, to become ERN HCP members

Improve access, equity and quality (1) Improve access to and quality of diagnosis, care

Improve access, equity and quality (1) Improve access to and quality of diagnosis, care and treatment, improving equity of care across the EU: • Complex situation requires interdisciplinary cooperation, interactions between the different disciplines of surgeons (e. g. ear and yaw specialists) and the interaction between surgery and treatment (e. g. orthodontists and yaw surgeons). Promote interdisciplinary working and dialogue to inform treatment decisions. • Early phase consultation of parents in the combination of diagnosis and treatment (e. g. the application of hearing aids) is an area where a better structure and understanding of different approaches/best practice • Patient friendly information on rare urogenital diseases, how to access experts (and visibility of expert centres) • ERN HCP to work with their MS representative and hospital to develop national networks and pathways

Clinical Guidelines (2) Clinical guidelines are essential for the patient community • Drive forward

Clinical Guidelines (2) Clinical guidelines are essential for the patient community • Drive forward equity in access to quality care e. g. : through the adoption of evidence based pathways and treatment protocols, inclusive of the patient perception and preference e. g. : adoption of CEN Guidelines in every Member State. • Identify gaps in evidence base diagnosis and treatments, developing clinical guidelines and consensus for each rare disorder involving patient representations for each ERN workstream. Specifically genetic diagnosis and genetic counselling.

More research! (3) More research activities and pushing the pace and impact of clinical

More research! (3) More research activities and pushing the pace and impact of clinical research • Increased prioritisation of investment and application for research into cleft, craniofacial and rare ENT conditions • Patients contributing to research activities and setting patients priorities

Identification and increase visibility of experts (4) Identification of expert surgical centres in the

Identification and increase visibility of experts (4) Identification of expert surgical centres in the EU: • Information for parents and patients about craniofacial diseases and where to find a specialists • Clinicians and patient leads to mapping of expertise in each country and engage with these experts to apply in the new call for HCP members for existing ERNs • Targeted expansion of Craniofacial ERN for coverage of MS and expertise

Thank You

Thank You