SMAARTS

Community Guidelines

Your role & its expectations

  1. You will be shown a number of documents, and part of the future research study will be explained to you. You will be asked to review these, and to make suggestions or give feedback that could help to make the various bits of the process more accessible, ethical, enjoyable, and beneficial to all members of the neurodivergent community.
  2. You will be asked to provide your feedback on the documents/materials shown to you within a pre-determined period of time. This will be calculated on a case-by-case basis, depending on how much you’re being asked to read/think about. It could – for example – be one week for a written document. Please get in touch with Ruth if you think you might struggle to stick to a timescale.
  3. You will be expected to respect your fellow CAB members, both in terms of their privacy and how you interact with them in any potential group settings. For example, you shouldn’t speak about other members of the CAB outside of the group.  
  4. You should also try to avoid upsetting anyone within any potential group meetings you may attend; we acknowledge that there may be differences of opinion and perspective raised within the group – and we want to ensure that everyone gets a chance to contribute – but we ask that you try to do this in a respectful and constructive way.
  5. If at any point you no longer wish to participate in the CAB, this is absolutely fine – please just let Ruth know and this can be arranged.

Our responsibilities to you

  1. We will provide all information and materials in advance. This will give you enough time to read/process/consider the materials before we ask for your feedback (either via email, or during a Zoom meeting)
  2. We will provide you with walkthrough videos of all documents that we are asking you to review in order to simplify and explain the information that’s included
  3. We will provide you with a set, pre-determined time period in which to look over the documents and prepare your feedback
  4. We will provide meeting reminders for those opting to take part via Zoom, and deadline reminders for those taking part via email/other asynchronous communication
  5. We will provide the agenda for the upcoming meeting ahead of schedule
  6. We will provide brief summaries of meeting points after the meeting has ended
  7. Ruth will be available for one-to-one communication (via video call, instant messaging etc) whenever required by CAB members
  8. We will fulfil any accommodation requests and make adaptations to the research process wherever possible
  9. If we cannot fulfil your accommodation request, or act upon your feedback, we will provide CAB members with a written explanation as to why this was not possible
  10. We will accept feedback on the CAB process at any point during your involvement
  11. We will uphold the anonymity of CAB members where requested
  12. We will uphold the voluntary basis of CAB membership, and remind all members at each stage that they can opt out whenever they want and with no explanation required
  13. We will compensate members for their time, but remind them that being in receipt of a voucher may have an impact on their government benefits, where applicable
  14. We will not ask CAB members to provide any information that is personal, sensitive, invasive, or liable to cause distress
  15. We will anonymise all data and – where applicable – delete any group meeting recordings after the transcript of the meeting has been created
  16. Your personal information (i.e. name, email address) will be kept secure and only accessible by Ruth. No other member of the team will be able to access this information

The audio version of this page is available below: