‘Nothing about us, without us’ has for several decades now been the rallying call for involvement of people with disabilities in research, service development, and societal inclusion more generally. Such effort has been led by academics (amongst other stakeholders) in the interdisciplinary field of disability studies with fervour leading to critical debate and profound social changes. The UN Convention on the Rights of Persons with Disabilities has provided a global human rights instrument to ensure inclusion of people with disabilities in all areas of life, including rehabilitation and research. The National Institute for Health Research (NIHR) in the UK (https://www.nihr.ac.uk/patients-carers-and-the-public/i-want-to-help-with-research/) has been spearheading Patient and Public Involvement (PPI) in Health Research for over a decade and since then, many other European countries have followed suit. Ireland’s Health Research Board (HRB) and the Irish Research Council (IRC) (https://www.hrb.ie/funding/funding-schemes/public-and-patient-involvement-in-research/), for example, have invested substantially in creating a sustainable PPI research infrastructure in higher education. The Canadian Institute for Health Research (CIHR https://cihr-irsc.gc.ca/e/48413.html#a6) and the US-based Patient-Centred Outcomes Research Institute (PCORI https://www.pcori.org/engagement/engagement-resources) have issued guidelines, resources, and frameworks for patient-oriented research that emphasise PPI.
Increasingly, researchers are becoming more aware of the importance of meaningfully involving relevant stakeholders in the planning and conduct of studies. In many countries, research funders now require a clear stakeholder or patient involvement plan. For some researchers, especially those subscribing to a participatory research ethos, PPI may already be central to their work. However, PPI in the basic biomedical sciences and in clinical research is leading to profound and transformative impact in terms of health outcomes. The type and the degree of PPI varies substantially across the research cycle. Some researchers work with patient and public partners right from the outset to identify research priorities and define research questions, while others employ patient advisory boards to vet research participant information materials, recruitment strategies, data collection and ethics or review board applications. Some, and far fewer in number, work with patients as equal co-researchers who are also involved in the dissemination, monitoring, and evaluation processes.
Participatory research has a long tradition in community development and research in many lower and middle -income countries. We are keen to learn what challenges and opportunities these research approaches may provide to advance rehabilitation programmes and disability inclusion efforts.
In this special topic, we would like to invite innovative research studies that position PPI at the front and centre of the field. We would like to explore what modifications have been undertaken to enable equal involvement of patient and public representatives to inform research designs, methods and practices to make them more inclusive, diverse, and equitable. This includes the use of simple, manual, assistive devices to complex, computerised technologies. The special topic invites scoping and systematic reviews, primary studies of any study design or research methods. Manuscripts may report on exploratory, methodological, clinical, quantitative or qualitative, or intervention research.
‘Nothing about us, without us’ has for several decades now been the rallying call for involvement of people with disabilities in research, service development, and societal inclusion more generally. Such effort has been led by academics (amongst other stakeholders) in the interdisciplinary field of disability studies with fervour leading to critical debate and profound social changes. The UN Convention on the Rights of Persons with Disabilities has provided a global human rights instrument to ensure inclusion of people with disabilities in all areas of life, including rehabilitation and research. The National Institute for Health Research (NIHR) in the UK (https://www.nihr.ac.uk/patients-carers-and-the-public/i-want-to-help-with-research/) has been spearheading Patient and Public Involvement (PPI) in Health Research for over a decade and since then, many other European countries have followed suit. Ireland’s Health Research Board (HRB) and the Irish Research Council (IRC) (https://www.hrb.ie/funding/funding-schemes/public-and-patient-involvement-in-research/), for example, have invested substantially in creating a sustainable PPI research infrastructure in higher education. The Canadian Institute for Health Research (CIHR https://cihr-irsc.gc.ca/e/48413.html#a6) and the US-based Patient-Centred Outcomes Research Institute (PCORI https://www.pcori.org/engagement/engagement-resources) have issued guidelines, resources, and frameworks for patient-oriented research that emphasise PPI.
Increasingly, researchers are becoming more aware of the importance of meaningfully involving relevant stakeholders in the planning and conduct of studies. In many countries, research funders now require a clear stakeholder or patient involvement plan. For some researchers, especially those subscribing to a participatory research ethos, PPI may already be central to their work. However, PPI in the basic biomedical sciences and in clinical research is leading to profound and transformative impact in terms of health outcomes. The type and the degree of PPI varies substantially across the research cycle. Some researchers work with patient and public partners right from the outset to identify research priorities and define research questions, while others employ patient advisory boards to vet research participant information materials, recruitment strategies, data collection and ethics or review board applications. Some, and far fewer in number, work with patients as equal co-researchers who are also involved in the dissemination, monitoring, and evaluation processes.
Participatory research has a long tradition in community development and research in many lower and middle -income countries. We are keen to learn what challenges and opportunities these research approaches may provide to advance rehabilitation programmes and disability inclusion efforts.
In this special topic, we would like to invite innovative research studies that position PPI at the front and centre of the field. We would like to explore what modifications have been undertaken to enable equal involvement of patient and public representatives to inform research designs, methods and practices to make them more inclusive, diverse, and equitable. This includes the use of simple, manual, assistive devices to complex, computerised technologies. The special topic invites scoping and systematic reviews, primary studies of any study design or research methods. Manuscripts may report on exploratory, methodological, clinical, quantitative or qualitative, or intervention research.
