Principles for research on intellectual disability
Published: 2021. Next review: 2025.
Good research design reflects the diversity of potential participants and accommodates a variety of approaches. There should be opportunity for people with intellectual disability to be included as participants of research. They should influence outcomes in healthcare design and delivery which affect them. To support their participation, these principles should apply to health research.
The rights of people with intellectual disability
As members of the community and as consumers of health services, people with intellectual disability have a right to be involved and give their opinion in research activities.
Inclusion
People with intellectual disability have opinions about medical and health research. They should be able to contribute at different levels of research.
Recognition of the diversity in functional and cognitive ability of people with intellectual disability should be a feature of research involving people with intellectual disability.
Self determination and consent
People with intellectual disability should have the opportunity to be participants in research. At times this will require modification of research processes and formats, including supported decision making.
Meaningful contribution
Where people with intellectual disability are involved in research, there should be clear benefits of their involvement in the process and the outcomes should reflect their involvement.
Qualified researchers
Where research is conducted or supervised by people or teams unfamiliar with the inclusion and support of people with intellectual disability, those researchers should be properly supported to conduct the research with people with an intellectual disability.
Background
There is increasing recognition of the value of health and medical research in influencing policy and reform processes to improve patient health outcomes and experiences.
The principles help evaluate whether research relating to people with an intellectual disability includes them, especially when considering whether to support or partner with others in research activities.
Most people with intellectual disability and their family and carers have yet to be consulted about their research needs. They are not generally included in research design, methodology or evaluation. Findings are not generally translated, nor is feedback given about research they have participated in.
This not only refers to research specifically relating to intellectual disability, but also general health and medical research as it relates to all members of the population, including people with intellectual disability.
These principles have been developed by the research and development subcommittee of the Agency for Clinical Innovation Intellectual Disability Health Network. They are based on the United Nations Convention on the Rights of Persons with Disabilities, which gives people with disability the right to self-determination and inclusion (including in research activity).