Disability Policy conducts research on the content of health and health-related policy designed to optimize social participation for persons experiencing disability in all areas of life, learning from the experience of spinal cord injury (SCI). We employ a variety of approaches and methodologies of research – both quantitative and qualitative. We not only research the best policy options, we also seek the most effective ways of implementing those options so that the benefits of sound research can measurably improve people’s lives.
Our research focuses on issues specific to Switzerland. Besides, we engage in cross-European research through funding from the European Commission under its Horizon 2020 program. We have a special interest in policies governing the provision, governance, and financing of rehabilitation within the health system. We have special expertise in the development, testing and implementation of indicators for health systems research and continuous quality management. These indicators also serve as basis for research into a human rights-based approach to scaling-up rehabilitation.
Our research is scientifically informed by the conceptual model of functioning in the World Health Organization’s (WHO) «International Classification of Functioning, Disability and Health (ICF)». The ICF provides us with a unique understanding of the experience of disability and how this can impact policy and policy decisions. We are also guided by the provisions of the United Nation’s «Convention on the Rights of Persons with Disabilities (CRPD)», the «Sustainable Development Goals», and other international treaties.
Finally, we are (closely) linked with the Disability and Rehabilitation team at the WHO. Guided by their Disability Action Plan 2014-2020 and the Rehabilitation 2030, we have the opportunity to explore and contribute to a variety of issues in disability policy research – from reform of accessibility provisions to improve disability assessment, disability support and service eligibility.
Indicators for rehabilitation services
We are completing an EU-funded, multi-country project. Its goal is to develop human rights indicators for health-related rehabilitation, in order to monitor the implementation of Article 25 of the United Nations’ «Convention on the Rights of Persons with Disabilities (CRPD)» and the Health Goal of the «Sustainable Development Goals». Building on this work, we will extend the range of rehabilitation indicators to other health and health-related policy areas.
One direction we pursue is the validity and feasibility of using the governance structure and convening power of professional rehabilitation organizations, such as the International Society of Physical and Rehabilitation Medicine (ISPRM) and International Spinal Cord Society (ISCoS), as «champions» for implementing human rights objectives into policy reforms for rehabilitation.
Another direction of research is to contribute to implementation research by using our indicators, both as guidelines for scaling up best rehabilitation practices – in Switzerland, Europe or other countries – and as the basis for evaluating scaling up activities. This work links to WHO’s on-going implementation research in line with its Disability Action Plan 2014-2020, and its program of action, Rehabilitation 2030.
Epidemiology of functioningThe social response to health needs
Using rehabilitation services for persons experiencing spinal cord injury (SCI) as an index case, and the International SCI Survey, currently in the field in 28 countries, as the basis for longitudinal data, we will develop linkages between the epidemiology of functioning. Specifically, we look at a) general structural characteristics of the «social response» to population health and health-related needs; and b) features of national health systems continuous quality management systems.
Both sub-projects will require setting out the parameters for a novel approach to epidemiology based on functioning as «the third indicator of health» and determining the basic components of the social response of a just society in meeting individual needs. This will involve us in contributing to WHO’s work on its Model Disability Survey – the first general population survey that uses the notion of functioning to identify populations experiencing disability of various levels of severity.
We will also collaborate with clinical quality management and the use of functioning information in monitoring quality in rehabilitation and other health services. Furthermore we collaborate with the platform of the «Swiss Learning Health System» (SLHS), funded by the Swiss government and located at the University of Lucerne.
Functioning information and health policy for the 21st century
Because of the aging population and the epidemiological shift towards increasingly worldwide prevalence of non-communicable diseases, rehabilitation will likely become the key health strategy of the 21st century. From a policy perspective, few countries are adequately prepared to deal with this fundamental shift in focus of the health system. Among other, impacts of these trends will be a) more accurate and relevant approaches to the determination of disability for eligibility for supports and services; b) coordinating health and functioning information across the health system to support better and more patient-centred health and health-related policy; and c) a more coherent social policy response to the needs for persons, as they age with, or into disability, especially given the complex needs associated with multi-morbidity and comorbidities between non-communicable diseases, including especially mental health problems. We propose in the next years to begin preliminary work to create a research agenda including these three important under-researched areas of health and social policy research.