Message of thanks and appreciation for having taken part
The participant should have a brief, general message of thanks for their contribution to the study. Some participants who stop taking part early may feel that they have not made an important contribution or, depending on the circumstances of their stopping, that they have somehow ‘let the study down’. It is important that they are reassured that they have made an important contribution.
Losing contact (where applicable)
Researchers may have a set process to follow when they cannot contact a participant. For example, they might make three attempts to contact a participant (possibly using different methods), and if none are successful then they will consider the participant to have stopped taking part, and make no further attempts (or no attempts until a later time when they might try again). A written communication could be sent when no further attempts will be made – if it is considered appropriate and if the participant’s contact details are considered still likely to be correct – to confirm to the participant what has happened. This can include that no further attempts will be made to contact them, or when further attempts might happen, if that is the plan.
Summarising exactly how the participant’s participation has changed: “How has my participation in the [study] study changed?”
Participation in many types of studies has several elements, and in some cases only some of these will have stopped. It is important that participants understand exactly how their participation has changed, and they should have this clarity as soon as possible. This includes where participants are considered to have stopped taking part because they have lost contact with the study (see above).
Further contact about the study: “Will I be contacted again about this study?”
It is useful to be clear with participants if they will be contacted again about the study (unless the nature of their ongoing involvement in the study means it is obvious that they will be). This includes who would contact them, and what it might be about.
Explaining why participation has stopped: “Why has my participation stopped?” (Where applicable)
Where some or all elements of participation have stopped because of a decision by someone other than the participant (e.g. their doctor), it will often be important to explain this verbally to the participant and give them a chance to ask any questions they may have.
Information about study payments/incentives/vouchers (may fit best with the information in this section, or in ‘other’ information, depending on the study)
It may be important to be clear about arrangements for any payments soon after the participant stops taking part, if it will likely be something they will wonder about. If this will be handled separately by the research sponsor or someone else, then the initial information given after the participant stops taking part could say that more information about payments will follow, and/or give details of who to contact in the meantime if they have any questions.
Clarifying participants’ options in relation to their participation: “What are my choices now about my involvement in the [study] study?”
It is good to give participants clear, understandable information about what their choices are about any possible further involvement in the study, building on the summary information given above. Unless some aspects of participation have been stopped by someone else to protect the participant, or the participant has lost the ability to make their own decisions, it should be up to the participant how their participation changes (within the limits of each study’s design).