Keynotes - Elizabeth Hanson and Anders Olausson, Awards, and Closing Passed
Thursday May 16, 2024 11:15 - 12:45 G3
Key-note speakers: Anders Olauson, Elizabeth Hanson
Moderator: Axel Wolf
Track: Keynotes and Awards
Elizabeth Hanson
PhD, Professor, Research Director
Affiliation(s)
Linnaeus University, Dept., Health and Caring Sciences, Kalmar; Swedish Family Care Competence Centre (Nationellt kompetenscentrum anhöriga-Nka)
Title
Informal carers as partners within person-centred long-term care
Abstract
Globally, informal (family) carers provide most of the care to persons with long-term care (LTC) needs. It is estimated that in the European Union alone, more than 52 million people – 14.4% of the adult population aged 18-74 – provide informal care on a weekly basis, with women providing two thirds of all informal care. The estimated economic value of informal care ranges between €320 and €368 billion per year. The COVID-19 pandemic shed a spotlight on carers’ invaluable role, so it would seem self-evident that they are a key partner within person-centred services and systems, alongside the person living with long-term, chronic conditions. Yet, to what extent are carers routinely identified, included, and valued as partners within person-centred policy, research, and practice?
I will illustrate a growing research base of partnership working with families and outline how health and LTC policies increasingly recognize the role played by informal carers, referring to the European Care Strategy. However, I will also explain the existing gap between carer friendly research and policy and their implementation within everyday person-centred care practices. I will conclude by arguing for the need to work at multiple levels to nurture care partnerships and to effectively reach out, support and empower carers.
Anders Olauson
Honorary president, European Patients’ Forum
Affiliation(s)
European Patients’ Forum, Brussels, Belgium
Chairman Ågrenska Foundation, Sweden
Title
The patient’s pathway – necessitates a shift of paradigms
Abstract
Having a chronic diagnosis provides the person with a unique perspective and knowledge about the true impact the condition has on your life. Your diagnosis affects all aspects of your life. This perspective is your own, and your involvement is paramount in your rehabilitation, cure and care. We now understand that when a patient can participate in their own health and treatment, it leads to much better outcomes. A holistic view is necessary, which is why all involved partners in the patient’s journey through life must cooperate. This means that healthcare, social care, school, insurance, and adult life need to be involved. It is not because healthcare professionals are not trained or skilled enough; it is simply because “it takes one to now one”. You, as a patient, possess a unique perspective! Even though we have known this for many years, we still do not apply it in ordinary healthcare. Why? The reason is said to be multiple, but even so, it has to stop now.
Seminar type
Pre-recorded + On-site
Lecture type
Keynote
Conference
GCPCC
Lecturers
Anders Olauson Key-note speaker
Agrenska Foundation
Anders Olauson has extensive and longstanding experience in establishing international and national organization for patient organisations and advocators. He has served as president and board member for the EURORDIS, a non-profit international alliance for rare disease patient organisations and has also served as president for European Patients’ Forum (EPF) from 2005 until 2016 when he was appointed Honorary President för EPF. His significant contributions include his participation in the establishment of The Committee for Orphan Medicinal Products at the European Medicine Agency. In Sweden, he was instrumental in the establishment of the Ågrenska Centre, a national centre for rare health conditions, for which he has served as its director and is presently chairman. One of his notable achievements is the founding of The Ågrenska Virtual International Academy, a research centre dedicated to rare conditions.
Anders Olauson has received numerous honours, including being appointed a member of ECOSOC within the United Nations in 2005, and the EURORDIS Lifetime Achievement Award. The Swedish government recognized Anders’ dedication by appointing him as a member of the Advisory Council at The National Board and Welfare from 2008 to 2014. His commitment was further acknowledged when he received HM The King of Sweden’s Medal.
Elizabeth Hanson Key-note speaker
Linnaeus University, Eurocarers
Elizabeth leads the ‘Informal Carers, Care and Caring’ research group at Linnaeus University which acts as the research arm of the Swedish Family Care Competence Centre (Nka). Nka is a national centre of excellence on informal (family) care funded by the Swedish Ministry of Health and Social Affairs. Elizabeth acts as expert advisor to the National Board of Health and Welfare Sweden on carers issues. She has a long- standing interest in informal care and over the last twenty-five years Elizabeth has led a variety of national and international projects in partnership with informal carers, patients/service users, health and social care practitioners, decision makers, policy makers and NGOs. The goal being to strengthen the knowledge base and stimulate evidence-based policies and practices for and with carers across the life course. Elizabeth is a board member and prior president of Eurocarers, the European association working for informal carers. She established the Eurocarers Research Working Group whose aim is to feed into the definition of evidence-based policy making on the role and added value of informal carers.
Axel Wolf Moderator
Centre director/Professor
GPCC
Axel Wolf is the Director of the University of Gothenburg Centre for Person-centred Care (GPCC), a leading interdisciplinary research center boasting over 200 national and international researchers dedicated to person-centred care research (www.gpcc.gu.se). He serves in a dual capacity as Professor and Senior Consultant Nurse Anaesthetist at the Sahlgrenska University Hospital and Sahlgrenska Academy at the University of Gothenburg, and as a Professor at OsloMet University in Oslo, Norway. His academic qualifications consist of an Executive MBA from the University of Gothenburg School of Business, Economics & Law, and a PhD in Healthcare Science from the Sahlgrenska Academy.
His research encompasses various dimensions of person-centred healthcare services, including examining the organizational prerequisites for implementing person-centred care, enhancing Patient- and Public Involvement (PPI), and advancing mobile eHealth and Peer-to-Peer platforms. Wolf collaborates with esteemed researchers globally, including those from the USA (Duke University), Spain (University of Navarra), the UK (University of Exeter & University of Plymouth), Finland (Åbo Akademi University), Denmark (IT University of Copenhagen), and Austria (University of Graz). He currently presides over the European standardisation committee (CEN/TC450), focusing on patient involvement in person-centred care, and co-founded the Gothenburg Pain Lab, an innovative research initiative for person-centred pain research (www.gothenburgpainlab.com)."