Communicating with Research Participants

(both potential and actual)

There are some important principles to keep in mind when communicating with research participants:

• Any information that someone provides you within the context of your work as a NCIL researcher should be treated as private, and not shared with anyone outside the research team. There are a very few exceptions to this, related to our legal obligations to report abuse or neglect of a minor or other vulnerable person. If you suspect that you have information of this nature, please consult with Aaron.

• You represent the lab and Dalhousie University, not just yourself. Act professionally and according to all lab and university rules.

• We normally create a @ncilab.ca email address for each new project. Don't use your personal email for communicating with participants.

• You can give out the lab phone number (902-494-1911) for recruitment purposes. It may be convenient to provide your personal number to participants, so that they can contact you if they are late, get lost, etc.. However, you are not obliged to do this and can use the lab phone for this purpose.

• The procedures we follow in all research projects are reviewed and approved by a REB (research ethics board). Your activities must follow the procedures described in the project's REB protocol. It is your responsibility to read the REB protocol and follow these procedures.

• Until someone has provided informed consent to participate in the study, we cannot collect research data from them. This means we are limited in the nature of information we can collect from people and, critically, we cannot store any information that we do collect. Generally where this matters is in pre-screening people for their eligibility to be in a study. See below for more about pre-screening.

Pre-Screening Potential Research Participants

Pre-screening often involves collecting personal information about people. Because they have not provided informed consent, we cannot store this information. It may, however, be necessary to store this information temporarily, for example if someone completes a pre-screening form and returns it to you. The critical practice to observe here is to minimize the risk that the person's information is seen by others. Some things you should do are:

• Conduct pre-screening by phone. Ask the person each screening question, but don't record the answers. The only reason to have that info is to determine the person's eligibility for the study, so if they pass screening, you only need to proceed with booking an appointment with them. If they don't pass screening, tell them they are ineligible and end the call.

• If you conduct pre-screening by email, inform the person clearly that email is not a secure medium and that any personal information they provide could be seen by others. The other good practice is to ask general yes/no questions (e.g., "Do you have a neurological condition?") and not ask for details (e.g., "List any neurological conditions you have"). If you need to dig deeper, again a phone call is preferable, but as long as you inform the person that their answers are not private, if they prefer email that is fine.

• Delete as soon as reasonably possible, all emails and documents associated with pre-screening that contain personal information about the participants.