Guidelines on Research Inclusive of People with Intellectual Disability
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, in order to influence outcomes in health care design and delivery which affect them. In order for this to occur, the following principles should apply to health research.
1. 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 activity.
People with intellectual disability have opinions about medical and health research, and 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.
3. 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.
4. 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.
5. 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.
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 Guidelines assist in evaluating whether research relating to people with an intellectual disability is inclusive of them, especially when considering whether to support / partner with others in research activities.
Most people with intellectual disability and their family / carer 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, and 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 Guidelines have been developed by the Research and Development subcommittee of the NSW Agency for Clinical Innovation Intellectual Disability Health Network. They are based on the United Nations Convention on the Rights of People with Disability, which gives people with disability the right to self-determination and inclusion (including in research activity).