Visit our Web:

Transcription

1 Project Title: Patient-centered integrated palliative care pathways in advanced cancer and chronic disease Project Acronym: InSup-C Logo: (please insert it in jpg format) Data: Funding programme: Seventh Framework Programme (e.g 7 th framework ) Funding programme web page: Project type: Collaborative Project: small or medium-scale focused research project Project number: Project Coordinator: Stichting Katholieke Universiteit (Radboud University Medical Center), Nijmegen, The Netherlands. Dr Jeroen Hasselaar (Coordinator) Contact details for Project Coordinator: Partner countries: Project web-site: Keywords: Summary of the project: J.Hasselaar@anes.umcn.nl (Dr Jeroen Hasselaar, Coordinator) R.Venkatachalam@anes.umcn.nl (Dr Ramprasath Venkatachalam, Project Manager) The Netherlands, Germany, United Kingdom, Hungary, Belgium, Switzerland, Italy, Spain, USA integrated palliative care; advanced cancer; chronic heart failure; chronic obstructive airways disease; care pathways InSup-C is a research study that will be carried out in several European countries over the next four years. The aim is to identify (prerequisites for) best practices in integrated palliative care (IPC). By 'integrated' we mean that several health care workers from different services work together to provide care in a seamless way tailored to individual patient needs. This is highly relevent for patients in the final stages of progressive disease. We will start by looking for information that already exists about how integrated palliative care is provided to these people. This will help us to make a classification system (taxonomy) of integrated palliative care services. Some examples from this list will be chosen for us to take a closer look at. To do this, researchers in each of the countries taking part will follow people as they go to their appointments and as they receive care and treatment at home, in hospital or in other places. We will talk to people about their thoughts and feelings about the care they receive. In addition, we will investigate how their self experienced symptoms develop and at which places care is received throughout the last phase of disease. Before we do this, we will elicit informed consent from people who want to take part in the research. The information we get from following people will help us to investigate the provision of integrated palliative care. We will put these examples on a website with a check list so that other services can see how they match up (benchmarking). We will also publish a book about the best examples

2 Aims (research questions): Expected Results: of care and will write articles and give conference presentations about the study results. We will invite politicians and people who make health policy from across Europe to a conference at the end of the project to show them the results. This will help those who make decisions about health and social care to do what they can to improve integrated palliative care back in their home countries. The overall objective of this study is to improve or to maintain the quality of life of patients with advanced cancer and chronic disease (specifically chronic heart failure (CHF) and chronic obstructive airways disease (COPD) and their relatives by improved access to appropriate palliative care at the desired place of treatment, together with improved communication, cooperation, and coordination within integrated care trajectories. To achieve this goal, this study will investigate and benchmark initiatives in IPC across Europe, including variations in structure, process of care, and patient outcome variables in order to identify (requirements for) best/good, and promising practices. This research will focus on patients with cancer and major chronic diseases, in particular advanced stages of COPD and CHF. InSup-C should contribute to the scientific evidence base that supports Member States to better organise their health systems within the relevant policy context, in particular in relation to care for cancer, CHF and COPD. InSup-C should address the varieties in health care practice across Europe's health care landscape including a critical understanding of the relationship between organisational features and the care trajectories that patients follow. InSup-C should advance the state of the art in the field of health services research, stimulate social innovation and enhance cooperation between researchers in Europe and other regions to promote integration and excellence of European research and social innovation in this field. Outcome: Date of application: Date of approval: Starting date: Duration (in months): 48 months Amount of contribution: ~ 4 million EURO Methods: 1. Systematic review of the literature 2. Developing a taxonomy of models of IPC 3. Gathering and analysing the views of patients and informal caregivers on experiential IPC through surveys, interviews, diaries and 'shadowing' techniques in five partner countries (shadowing) 4. Identification and benchmarking of good/best and promising practice in IPC 5. Developing a dedicated interactive website to enable benchmarking of services against good practice and the provision of elearning tools 6. Dissemination activities throughout the project including: publication of peer reviewed journal papers, conference presentations, publishing a book of good practice exemplars, providing benchmarking and elearning tools, organising an invitational EU level conference to impact/influence

3 Deliverables: Time lines (milestones): health and social policy makers in this field Consortium agreement 1.2. Kick-off event 1.3. Executive Board meetings 1.4. General Assembly meetings 1.5. Final EC report 2.1. Report on literature review of IPC in partner countries 2.2. Report on literature review of IPC in oncology in partner countries 2.3. Report on literature review of IPC in chronic diseases in partner countries 3.1. Report on existing models of IPC in partner countries 3.2. A general taxonomy of existing IPC models across Europe 4.1. Interim report on experiences of patients and (informal) caregivers within selected IPC models in partner countries 4.2. Final report on perceptions of patients and (informal) caregivers within different IPC models 5.1. Report(s) on best, good and/or promising IPC practices in Europe 5.2. Report on opportunities and barriers for IPC in Europe 5.3. Book on inspiring practices in IPC in Europe 6.1. Designing and regular updating of a general project website 6.2. Self-checklist and e-learning modules 6.3. An invitational conference at the end of the project 6.4. Peer-reviewed scientific papers 6.5. Scientific presentations 6.6. Two PhD theses 6.7. Comprehensive report milestone 1: Consortium agreement milestone 2: Kick-off event milestone 3: Development of interactive project website milestone 4: Report on existing literature milestone 5: Report on existing models milestone 6: Patient/caregiver experiences report Work package leaders (name and affiliation): milestone 7: Benchmark report WP1: Dr Ramprasath Venkatachalam (project manager), Radboud University Medical Center, The Netherlands WP2: Prof Dr Johan Menten, University Hospital Leuven, Belgium WP3: Prof Dr Lukas Radbruch, University Hospital Bonn, Germany WP4: Dr Marieke Groot, Radboud University Medical Center, Netherlands and Dr Agnes Csikos, University of Pecs, Hungary The

4 WP5: Dr Jeroen Hasselaar, Radboud University Medical Center, The Netherlands Other partners (name and affiliation): Work package goals: WP6: Prof Sheila Payne, Lancaster University, United Kingdom WP1: Project Management. This WP concerns the overall co ordination of the project by the coordinator, who is assisted by a Project Management Office (PMO). Together, they take care of the management of contractual, financial, legal, administrative and scientific issues. Specifically it will oversee the: 1. Management of the project consortium 2. Management of project finances 3. Management of legal issues 4. Management of project reporting WP2: Literature review of existing evidence for IPC initiatives in Europe. This WP will conduct a systematic review of the literature in three parts and report accordingly: 1. literature pertaining to IPC in the participating countries 2. literature pertaining to IPC in oncology in the participating countries 3. literature pertaining to IPC in chronic diseases in participating countries WP3: Taxonomy of IPC initiatives in Europe. This WP will develop a general taxonomy of existing palliative care models across Europe and contribute to the second objective of the research proposal: to identify existing models and initiatives for integrated palliative care in Europe. The taxonomy will be based on the systematic reviews produced in WP2. The scheme will include indicators that allow benchmarking of existing integrated palliative care models and initiatives in WP5. In addition to the taxonomy, the work package will produce a report on the existing models of integrated palliative care in the countries involved in the study as a secondary objective. WP4: Experiences of patients and (informal) care providers with IPC. This work package will give insight into the experiences of patients with advanced cancer, COPD, and CHF in integrated palliative care considering a) their journey through the health care system, b) self reported symptoms and quality of life, c) opinions on quality of care. Furthermore, insight will be given to experiences of (informal) care providers considering a) burden of care, b) opinions on quality of care, c) collaboration in care networks (see also WP5). WP5: Development of (requirements for) best practices in IPC in Europe. This WP uses the outcomes on reviews (WP2), taxonomy (WP3), and patient perspectives (WP4) to prepare for online dissemination in WP6. This work package will deliver a benchmark of existing palliative care

5 initiatives across Europe, an identification of (requirements for) best, good, and/or promising practices, and an investigation of barriers and opportunities of up scaling of integrated palliative care (including a comparison with the United States (collaborative partner) at a health system level). Dissemination (publications - articles): Dissemination online: WP6: Dissemination. This WP involves all aspects of internal and external communication and coordinating the dissemination of the project results using a variety of multimedia to reach as wide an audience as possible. There are six objectives including design and regular updating of a general project website that will also be used as an e learning platform. Another important objective of WP6 is successful outreach to key persons active in policy making at governmental and health care organisation levels to stimulate implementation. At the outset we will agree a publication strategy to maximize the impact of the outputs. The publication strategy will include intellectual property, authorship, target journals and timeline for outputs. We aim to also direct outputs to policy and practice orientated and other peer reviewed journals to promote the adoption of best practice models in a number of countries, where necessary in a number of European languages. These outputs will be highlighted using social media e.g. Facebook, Twitter etc. A bespoke interactive website will be designed for this project by the web manager: Anthony Greenwood at Lancaster University. He has extensive knowledge and experience of designing websites for a number of purposes including the renowned website of the International Observatory on End of Life Care, at Lancaster University which currently hosts 60 country reports providing detailed epidemiological and ethnographic information on palliative care, and the website for the EU FP7 funded ATOME (Access To Opioid Medications in Europe) project. Based on these principles, a new website will be designed that facilitates effective communication across all the project partners to ensure speedy management and governance processes, including those relating to the overall consortium leadership (WP1) and to the interdisciplinary and cross country empirical work of the scientific elements of the project (WP2 4). It will also be used to assist in the recognition of best practices (WP5) by facilitating and maximizing the contributions of all members of the consortium. There will be parts of the website that will be password protected to allow confidential communication and sharing of documentation within the teams. The outward facing elements of the website will be attractive, intuitive and easy to use, encouraging wide usage of the project results, even at early stages. A special feature will be a self check list where countries can fill in their own parameters and regional health system features for a tailor made comparison with the best practice model. We envisage that this assessment will enable people to check their own status and do benchmarking. The website will also host a number short e learning

6 Dissemination (Conferences): Website from which to access full reports: modules which will be used to support optimisation of local practices. The Lancaster University partner has previous experience of designing and developing these interactive educational modules for hospice and other staff. Where possible and when technological permits we will use webinars to enable real time and any time access to project results presented in seminars and for other educational events. In addition, there will be a number of special features on the website to make it appear vibrant and engaging including: breaking news, profiles of team leaders and researchers, journal paper of month to highlight project outputs, and links to relevant sites and resources. The website will be accompanied by a proactive use of social media such as podcasts, blogs, facebook and twitter, to maximize the responsiveness and appeal of multimedia communication. A major invitational conference (month 46) will be held at the European Parliament in Brussels to promote the rapid high level dissemination of the study results and ensure that they are translated into policy recommendations. This conference will be organized in collaboration with the World Health Organisation who will assist with drawing up a list of international representatives at governmental level who have the necessary power and influence to promote changes at health service policy, legislative and fiscal levels. In addition, we will work with a group of MEPs who have a special interest in palliative care, to organize the conference and obtain maximum publicity for the event. The invited delegates will also include patient and family representatives from the areas of cancer, COPD and CHF, health and social care professional associations working in these areas, European organisations who promote health and well being in chronic disease, ageing and care giving. The Conference will enable discussion of project findings and assist in the interpretation and implement of best practice models and new learning will therefore be incorporated into the Final Report. We also aim to publicise interim and project end findings through presentations at conferences of the EAPC and at other relevant academic meetings at national and international levels. If you have previously completed this form we would ask that you fill in the Project Title and only complete the fields which have changed and require updating.