When I see a link in social media to an online survey, I always check for an ‘information sheet’ present as either the first step in the survey, or as a separate link.
In relation to AAC research, I have an interest in research methodology relating to participation by people who use AAC and their families in the online world. For any online survey that is research into AAC, I look for an information sheet and consent statement, before proceeding to assist in recruitment by distributing the link to the info/survey on Twitter. I like to get the online original source of the information – to be informed by the researchers – rather than third party reports (e.g., other facebook pages that show the information).
If it is for myself, I can email the researchers and ask for the information sheet, so an email contact and researcher name/institution is useful. If I am distributing information about an online survey via Twitter or Facebook to others, I aim to distribute both the original information site link and the online survey site link before disseminating for recruitment. This is because participants need good access to the information sheet in order to participate with ‘informed consent’. I can understand other people not going to these lengths, but it is a preference of mine to do so. Ideally, researchers might start using online survey tools that enable them to have a ‘start up’ page that presents the information sheet to the participant before they enter the survey start page. This would reduce the need to click twice or risk separating the process of informed consent from the participation online.
It is important that people with communication disabilities are included more frequently in health and social research, as they are often excluded on the basis of being unable to speak, and/or read, and/or write. Their views, experiences, and preferences gathered in online surveys will be of great value to improving systems, policies, and services in the future. Even though the risks might be small, they are present – research in the field of AAC reveals a lot about a person’s communication that can identify them to people who know them and who read about the research. It is for this reason that the information sheet for participants is worthy of close reading, and important in the dissemination of links to online surveys.