What is "Open Research" or "Open Science?"
"Open Research" (sometimes called "Open Science") refers to a set of practices in research that aims to make research more transparent. This includes practices like:
"preregistration", where researchers will register their aims and hypothesis before they collect any data
"open data", where researchers allow other people to use the research data they collect (note: research data is almost always anonymous. The sharing of what would be considered "personal data" is strictly controlled in the UK)
making materials like research tasks, or analysis scripts (the code that people use to conduct statistical tests on their data) open to others
"open access" publishing, where authors publish in journals that are open to everyone, or authors might "pre-print" an early version of their article that everyone can read
Why is this relevant to autism research?
Open research practices have been argued to help improve the quality of research. This does not mean that research that does not use open research methods is wrong. However, these methods help researchers to spot mistakes in their analysis, and prevent them from writing up papers after they know their results and perhaps changing what they said their predictions would be. These methods can also help combat publication bias (this is when studies that don't find a "significant effect" don't get published - but these studies are important because they might signify that something other people have reported might not be the whole picture).
We think that increasing open research practices in autism research will make the evidence base for supporting autistic people more robust. It could also help challenge some of the assumptions about autism that have developed from the literature, that have been sustained by publication bias.
You can read a short piece written by some of the OAR team on this topic here.
We are interested in the views of autistic people and their families about sharing research data. In recent years, scientists and researchers have been encouraged to share their research data and make research data “open”. The reasons for this are to allow other researchers to also use the data to make faster discoveries, and also to combat scientific fraud, and check and correct mistakes. However, people who take part in research might have concerns about their data being shared with people outside the original research team. People might feel comfortable with some types of data being shared, but not others, or there might be certain factors (e.g. who is funding the research, who are the researchers, and who has been consulted on the design of the project) that affect how happy people are for research data to be shared. Research data should always be anonymous: we are not asking about the sharing of personal information, such as names or addresses. We are asking about sharing anonymized research data.
The study will explore the views of autistic people, and parents of autistic children and youth, on data sharing.
You can read more about this study here, or watch a short information video here.