Research Passport Autistic people say that they would be more likely to take part in research if they feel that their needs are met and their views are listened to. Yet autistic people and their families often report negative experiences of participating in research.
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Aware of this situation, Robyn Steward, an autistic Research Associate at CRAE, had the idea of developing a Research Passport – an easy and accessible way that people can share their needs and experiences with researchers, so that everyone feels comfortable to take part in research from start to finish. With funding from the autism research charity Autistica, CRAE researchers set out to create such a tool. Working closely with autistic people, their family members and autism researchers, the CRAE team has been identifying what a Research Passport might ‘look like’ and how to make it as useful as possible, for participants and researchers. The Research Passport will provide important information such as: • •
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personal details, contact information,
communication preferences (such as how the person wishes to be communicated with and they would like to communicate with others), information about sensory needs (such as noise or light sensitivities), and other personal information participants would like to share.
The idea is that researchers can use this information to adjust the research experience to best suit the needs of their participant. We also hope the Research Passport can help researchers to adjust their research procedures and communication styles so that everybody’s voice can be heard in research. To date we’ve worked with autistic adults, parents of autistic children and autism researchers to design a prototype Research Passport, which has been pilot tested in a few research studies. We have also been working with researchers across the UK to collate best practice examples of research documents, such as informed consent and information sheets, to promote inclusive, accessible autism research throughout the UK.
