DCRM 2023
- s-Hertogenbosch
- Dit evenement is afgelopen
Keynotes
Prof. Jan Willem Gorter & Alicia Lucardie
Rehabilitation for all – are we at a tipping point?
As a society of rehabilitation professionals, we say that we are committed to the principles of equity, diversity, inclusion, and social justice in all that we do. At least, that is what we think we should be doing. But do we actually do this? And if we do this, are we acting at the individual (micro) level, the community (meso) level, or at the societal (macro) level? While nobody disagrees on the theme “rehabilitation for all” of this year’s DCRM congress, the reality is that there are disparities in opportunities and outcomes for diverse communities, in the Netherlands and globally. It also should be acknowledged that these disparities are rooted in historical and contemporary injustices and disadvantages.
In the opening keynote of the 2023 DCRM congress, Alicia and Jan Willem, two rehabilitation physicians and VRA members with diverse experiences, will seek a shared understanding of the issue of equity and equality, and will search for common ground and action. We will explore what this means for our clinical practice, research, leadership, and advocacy activities. It is time that we become (self)aware of existing inequities and inequalities, and the importance of thinking and talking about our values, individually and collectively. Good clinical practice needs to be coupled with effective self-advocacy as well as advocacy. We hope that increased awareness and knowledge will benefit all people.
Professor Jan Willem Gorter, MD, PhD, is a Pediatric Physiatrist and Head of Pediatric Rehabilitation at UMC Utrecht (locations Wilhelmina Children’s Hospital and Princess Máxima Center for Pediatric Oncology), Professor of Pediatrics (part-time) and CanChild Scientist at McMaster University, Hamilton, Ontario, Canada. He also is the Chief-Editor of the journal CHILD: Care, Health and Development. Jan Willem has a special interest in the health, development and wellbeing of children and youth with disabilities. His work focuses on the six F-Words for child development: family, function, fitness, fun, friends and future. With his team, Jan Willem aims to optimize children’s participation in our society, increase their autonomy and facilitate their transition into adulthood. To make sure youth with disabilities are on a healthy trajectory, Jan Willem’s program of research is guided by the ‘Lifecourse Health Development’ model in which the input of children and young people themselves and their parents is crucial. Jan Willem’s mission is to promote participation for all. He hopes to inspire others to move beyond the individual person and to look at the ‘bigger picture’ with the goal to create a more inclusive society where everyone feels that they belong and that they matter.
Alicia Lucardie, MD MSc, is a Rehabilitation Specialist and currently studies Global Health Policy at the London School of Hygiene and Medicine (LSHTM) in the UK. She is also part of the Dutch Transcultural Rehabilitation Working Group. Alicia holds degrees in both Medicine and Clinical Research (MD MSc) and Health Sciences (BSc), and has previously studied Arabic language and culture. Before her specialisation in rehabilitation, Alicia worked as a supervision doctor and project manager for cervical cancer screening in Indonesia. Alicia’s key interest lies at the nexus of global health and rehabilitation. Having grown up in South Africa, Indonesia and the Netherlands, her mission is clear: to break down barriers, embrace diversity and unearth tangible, lasting solutions to pressing healthcare matters. She hopes to inspire others to contribute to inclusive and equitable rehabilitation for all, challenge conventions, and importantly, to never stop asking questions.
Sander Hilberink
Equality within rehabilitation medicine: new roles and challenges
Equality and Disability is not an evident combination. Anyone who has seen the Netflix documentary ‘Crip Camp: A Disability Revolution’ understands it is emotionally loaded and fought for, against prevailing standards. Crip Camp shows the seed that would eventually blossom into the United Nations Convention on the Rights of Persons with Disabilities. We are now 50 years on, but equality for citizens with disabilities is still under challenge. This challenge comprises many areas: Finances and employment, cultural, sexual, family formation, parenthood. Besides this inequality in citizenship, citizens with disabilities have earlier and more health problems and lower life expectancy. Much of the above takes place out of sight of the rehabilitation physician, both literally and figuratively. Therefore, this contribution will address how rehabilitation specialists should use their expertise more extensively. Not only outside the departmental walls of the outpatient clinic, but also outside the walls of the hospital and rehabilitation centre. Not only within healthcare settings, but also in the public domain and debate. The rehabilitation professional is pre-eminently the expert on Equality and living with disabilities. The profession will have to reach out more to live up to that expert role and seize their unique opportunity to promote the Equality of citizens with disabilities.
Sander Hilberink (1974) is Applied Research Professor Ageing with lifelong disabilities at Research Centre Innovations in Care of Rotterdam University of Applied Sciences. He graduated as a psychologist from Radboud University Nijmegen in 2000 and obtained his PhD with the thesis ‘Smoking cessation support for COPD patients in general practice’ in 2013. His research group focuses on ageing with lifelong disabilities, from the perspectives of citizenship and different stages of life. Key areas of his research are ageing with disabilities and citizenship; sexuality and support; and pregnancy and parenthood with disabilities.
Stephanie Jansen-Kosterink
Equality and inclusivity in rehabilitation care: How to create impact by means of personalised health technology?
In rehabilitation care there is a natural tendency to use technology. Especially when patients are disabled and the technology helps the patient to regain independency. A wide variety of technologies are available in rehabilitation care but the uptake is still disappointing. In this keynote I will address my solutions to create impact by means of personalised health technology and to achieve equality and inclusivity in rehabilitation care. First it is important to involve end-users in all phases of research; discovery, development, demonstration and deployment. The continues involvement of end-users (patients and/or healthcare professionals) is crucial to ensure a perfect fit between the user, the health context and the technology and go beyond standard co-creation activities. Second it is important to broaden our view towards the evaluation of personalised health technology in rehabilitation care. Off course the clinical perspective is importance to address, but also the user and societal perspective should be part of an evaluation. Traditional study designs do not fit with this view on evaluation and therefore we have to search and gain experience with non-traditional study designs, such as the cohort multiple Randomized Controlled Trails, the Micro-randomized trials and the Stepped wedge cluster randomised trials. This keynote will end with the relatively unknown Social Return on Investment (SROI) method to assess the societal impact of a innovation and the need to use this method to force us to make choices about which innovations will be continued and scaled up given the limited resources and capacity in rehabilitation care.
Stephanie Jansen-Kosterink, PhD (female) has a background in human movement sciences (VU University Amsterdam). Stephanie joined Roessingh Research and Development (Impact lab for personalised health technology) in Enschede in October 2008 and her work mainly focusses on the clinical and societal evaluation of personalised health technology. End 2014 she successfully defended her PhD thesis: “The added value of telemedicine service for physical rehabilitation”. As senior researcher she works (and worked) on various European and national projects (e.g., including FP7-MyoTel, FP7-CLEAR, FP7- PERSSILAA, H20202-Back-Up and H2020-RE-SAMPLE). In these projects, she was responsible for the overall clinical evaluation of the developed eHealth service with end-users in daily clinical practice. Stephanie currently works as senior researcher and is as a board member of the regional ethical committee an expert in ethical guidelines for eHealth evaluation in a clinical setting. In 2015 Stephanie passed her GCP-WMO exam and since 2017 she is qualified to use the SROI methods to assess the societal impact of innovations, such as personalised health technology and eHealth service.
Prof. Alice Schippers
Centering the Margins: perspectives on stigma, discrimination and epistemic injustice
Much of the equity, diversity and inclusion debate has focused upon practices and provision for marginalized people, such as people with disabilities. Yet it is evident that the population of persons and in some cases whole communities who have been denied access to appropriate facilities, such as education and employment, is much wider and more complex. The relationships that exist between poverty, class, gender and exclusion from adequate services are evident in many countries, and each of these factors interacts with others to perpetuate stigma, discrimination and exclusion.
In this keynote I will focus on forms of discrimination and exclusion, based on stigma and implicit norms, and consequently marginalisation. This in turn leads to what is called epistemic injustice, which refers to situations where people are not given the recognition they deserve because they are not valued in their capacity as subjects of knowledge and epistemic agents.
Drawing on experiences of people who have themselves been the subjects of marginalisation, I will emphasise the oft heard mantra of “nothing about us without us” as an important consideration for policy makers, researchers and professionals who express a commitment to produce more equitable and inclusive practices. To illustrate this, I will turn towards examples of collaborative and inclusive research.
Alice Schippers is professor of Disability Studies, by special appointment on behalf of Disability Studies in Nederland, at the University of Humanistic Studies in Utrecht, the Netherlands.
From an early age she is interested in living with disabilities, as natural part of her life. As a teenager, started with a voluntary job in the disability field and from that experience onwards, she acted in several roles in this field: As a researcher and leader, as a volunteer and activist, as a mother and friend.
From mid 1990’s, her research focus is on (Family) Quality of Life, Social Inclusion and Inclusive Research. She is Fellow of IASSIDD (International Association for the Scientific Study of Intellectual and Developmental Disabilities), and currently as Vice-President.
She is associate editor with two international journals and also active in several (inter)national committees.
Prof. Jane Cramm
Delivering person-centred care: a challenge for rehabilitation medicine
Person-centred care means that focus shifts from symptom/disease management to the well-being needs and expectations of individuals and communities. By recognising these needs and expectations it is possible to better understand the impacts of chronic diseases disabilities and the potential limitations that come with it, and thereby determine the types of care and support that individuals require. Pinpointing how person-centred care affects patients as to their ability to maintain well-being, and which dimensions of well-being are compromised, will help determine the changes needed to protect their well-being.
Building on top of existing healthcare systems is not enough; a comprehensive approach is needed to truly build support in healthcare (including rehabilitation) settings for the achievement of overall well-being. Implementing such a comprehensive approach is, however, often difficult, costing both time and money which are not always available. But even something seemingly small as putting patients at the centre of their own healthcare, is an approach that is not widely practiced in reality. Healthcare systems and professionals struggle with the delivery and organization of person-centred care leading to wide variations.
This struggle is especially evident among the most vulnerable groups in society. It is a great challenge for rehabilitation medicine to provide vulnerable patients with care that actually protects their well-being. It’s about how can rehabilitation organizations and doctors really make a difference for vulnerable groups, but also about the question how it can be ensured that vulnerable groups are referred to rehabilitation services.
Healthcare organisations who are successful in delivering person-centred and taking the context of patients and professionals into account, do show improved outcomes. Evidence indeed has shown that higher levels of person-centred care results in more favourable organisational, professionals and patient outcomes, which are promising findings and give us direction on how to move forward in care delivery.
Jane Murray Cramm is a Full Professor and vice-dean at the Erasmus School of Health Policy & Management, Erasmus University Rotterdam, in the Netherlands. Jane holds a bachelor’s degree in health sciences, a master’s degree in health care management and a doctorate in sociomedical sciences from Erasmus University. Research on person centred care and diversity has been a core component of her career. She has been a principal investigator in studies evaluating several large-scale complex intervention programs. Jane has published over a 150 peer reviewed articles.