While the need for integrating palliative care (PC) services into heart failure (HF) care has been well recognised, as of yet this integration lacks behind, especially when compared to cancer care. Currently, only 5-7% of patients with HF utilise PC services, due to a focus on optimising therapy and an unpredictable disease trajectory with exacerbations which hampers prognosis. As a result, many symptoms and concerns that are not directly related to HF are not recognised and undertreated and patients are often referred to PC services only at the very end of their lives. The RAPHAEL consortium sets out to take the next big step in integrating PC into HF care by integrating the RAPHAEL palliative care approach in existing HF care pathways. This flexible and patient centred approach starts with the identification of multidimensional symptoms and concerns, prioritise needs with patient and informal carer and formulate a proactive care plan. The symptoms and concerns will be monitored by the patient at home using the PAL@HEART application. The app can be used to evaluate interventions, support communication and earl identify new or increasing needs. As a result, the care needs of each individual patient with HF are addressed faster and better, improving their quality of life and autonomy. Moreover, this will lead to a reduction in emergency hospitalisations, unburdening the healthcare system and reducing costs. The RAPHAEL project sets out to adapt the RAPHAEL approach to HF care within a European context and test and validate its (cost-)effectiveness via a feasibility and large-scale evaluation study performed in 7 EU countries, the UK and Switzerland. It brings together experts in palliative care, cardiology, and primary care as well as professional organisations and patient representatives. Together the RAPHAEL consortium is uniquely situated to demonstrate the (cost-)effectiveness of the RAPAHEL approach and launch its implementation in Europe and beyond.

"The rate of medical advance during 20th century was enormous, due to improvements of technology as well as new scientific discoveries. Modern palliative care, as part of the health system, has developed rapidly in western countries, then all over Europe in the last part of the twentieth century.In the process of developing palliative care, an important role is to educate professionals and that is a concern included in all partners’ organization activity.Although major steps in the process of integration and delivering palliative care trainings for graduated clinicians, designing competencies frames for PC professionals, introduce this clinical specialty in the university curricula, provide post university specialized programs, a SWOT analysis conducted by the consortium partners revealed low capacity to effectively read and understand research literature and few studies made in palliative care in an evidence-based clinical practice framework. As research skills are needed for lifelong learning and level of research in the formal education varies between countries and between different PC professionals/ educators the project RESPACC is aiming to include core research competences as part of the general education related to clinical practice of palliative care professionals.The project will address the following objectives:1: Designing effective education strategies for enhancing basic research competences acrossmembers of multidisciplinary teams in palliative care.2. Stimulating the development and use of innovative approaches to increase the effective uptakeevidence-based research in palliative care.3. Increase the research capacity for a number of 48 practitioners in palliative care.4. Raise awareness among PC clinicians regarding the importance research integration in clinicalpracticeThe project has an innovative approach in developing mixed intellectual outputs considering the wide access to internet, most of educational materials being available in digital format:- research/ study report on specific palliative care competences to address the necessities of population cared- the analysis will be the main point for a whitepaper paper disseminated to stakeholders by EAPC- developing a handbook for introducing palliative care clinicians to critical reading and academic writing mixed with webinars – the curriculum developed will be presented in a short term learning event attended by 26 palliative care professionals- a toolkit for guidance the palliative care professionals in developing their own research proposal – this will include videos that will provide the mentoring process with real cases;- handbook and guidance materials for understanding qualitative and quantitative research – the curriculum will be presented in a short term face to face event and eLearning material, attended by 22 palliative care professionalsEducational materials are in English and national languages, practice based and easy to connect with daily clinical experience.- Education and project website- where all elearning materials will be uploaded will be promoted and disseminated.- a whitepaper with recommendations of inclusion of core research competencies into the training of Palliative Care cliniciansSpecifically, the project expects the following number of direct participants from the partner countries to be attracted in the project the various activities and short-term training events:48 trainees attending the 2 Short-term joint staff training events (“Introducing palliative care clinicians to critical reading and academic writing"" and "" Translating clinical issues into research projects”; 245 participants in 4 Multiplier events. Invitations to the multiplier events may be include interested practitioners from other countries listed under Participant and Partner countries in the Erasmus+.The long-term cooperation between partners’ organizations and their experience covering the fields of palliative care services, education and research will ensure the quality of intellectual outputs produced within the project. Regarding impact on European and international levels, a strong asset on this matter is the presence of EAPC in the RESPACC partnership. All the results will be disseminated at national level and by EAPC to the 56 member associations out of 32 countries, being applicable and transferable to other countries (through European conference, website, taskforce)."

Due to the rise in cancer and multiple chronic disease, the number of patients with refractory symptoms, ie severe symptoms where conventional treatment options fail, is likely to increase. In such cases palliative sedation (PS) can be indicated which involves the intentional lowering of consciousness at the end of life. However PS is too often restricted to continuous deep sedation and confused with hastening of death. This proposal offers a modified concept, namely proportional PS, with titration of sedatives up to the point of symptom control to improve patient comfort. Firstly, the project will offer a review about state-of-the-art refractory symptom management and a country survey. Secondly, an observational multicenter study will be performed in five countries to study the effect of proportional PS at patient comfort and symptom relief. Thirdly, a multiple case study of 50 cases will investigate caregivers and family experiences. Fourthly, moral case deliberation will be studied as a tool to improve multidisciplinary decision making for the treatment of refractory symptoms/PS in 16 clinical centers in 8 countries, including the effect on caregiver emotional distress. Fifthly, a Cost Consequence Analysis will be provided to feed a policy workshop and recommendations for the further development of palliative sedation in Europe. Sixthly, a revision of the 2009 EAPC framework for PS will be undertaken, using a Delphi procedure. Finally, a free online education programme will be delivered together with an abook and a closing congress and webinar to support dissemination. The project consortium consists of experts in the field of palliative care and PS from 8 North-Western, Southern, and Central-Eastern European countries. Renowned advisory board members are involved among which the European Cancer Patient Coalition to foster the patient perspective. A dedicated European taksforce for PS is foreseen as a follow up after the project's finalization.

EUonQoL aims to develop, pilot and validate the EUonQoL-Kit, a patient-driven, unified system for the assessment of quality of life (QoL) based on evaluations and preferences of cancer patients and survivors. The EUonQoL-Kit will be developed from a patient perspective, administered digitally, available in the EU27 and Associated countries languages, and applicable in future, periodic surveys to contribute to the EU’s mission on cancer. At the core of the EUonQoL there is the adoption of a multistakeholder, co-design methodology, engaging patient representatives, healthcare professionals, administrators, policymakers, and citizens in all project related activities. Existing QoL tools will be reviewed, scoping all relevant sources. This review will be used in the context of the codesign consensus with stakeholders’ and patients’ preferences to identify gaps and establish all QoL dimensions that are relevant from the perspectives of patients, clinicians, and society. A multidisciplinary researcher panel, composed by the most talented experts, will develop the EUonQoL-Kit that will be validated in a pilot survey using digital data collection within month 24 of the project. A total of 4,000 cancer patients and survivors will be enrolled through a network of EU cancer centers. An analysis of factors potentially impacting on cancer patients and survivors QoL, will also be performed. Implementation and exploitation strategies, as well as the linkage with other Cancer Mission projects and actions will be explored to develop future periodic surveys. EUonQoL is composed by research institutions, cancer centers, as well as scientific, professional, and patient representative organizations involved in cancer research, all with extensive experience and robust scientific background in the development of self-report QoL measures.This partnership fuels the ambition of EUonQoL to translate QoL information into future changes in cancer care policy and clinical practice.

In the EU, 2.7M people were diagnosed with and 1.3M died of cancer in 2020. Over 12M people have survived cancer, thanks to advances in early detection and new therapies. With higher cure rates and more patients living longer with cancer, access to patient-centred care consisting of optimal supportive, palliative, survivorship and end-of-life care becomes increasingly important. However, cancer care still has silos, and to this day, there is no technical support available that is suitable for different cultures, settings and environments. Several randomised controlled trials have provided evidence that the integration of patient-centred care in standard oncology care results in better patient and caregiver outcomes. As yet, these findings have not translated into clinical routine. In this project, we will develop technology-enhanced and evidence-based patient-centred care pathways, called MyPath, to be merged with tumour-centred treatments across supportive, palliative, survivorship and end-of-life care. MyPath integrates patient-reported outcomes of the OUS Eir software, to be further advanced with contributions of renowned European oncologists, ethicists, psychologists and sociologists. It will be configurated on the eHealth platform of our SME partner DNV Imatis. Its effectiveness and sustainability will be assessed in an implementation science study in 9 clinical centres across Europe. With the support of leading cancer care professional associations ESMO and EAPC, we are committed to delivering the right care to the right person at the right time by the right persons. We hypothesise that MyPath can significantly improve the quality of and access to treatment and care, reduce variations in clinical practice, and optimise resources in family, community, and hospital care settings. This will ultimately reduce the physical, emotional, and ultimately economic burden linked to cancer.