Principle O4: losing contact

Loss of contact between a participant and researchers should not be considered the same as a participant saying that they want to stop study participation.

Sometimes researchers might find that a study participant is no longer contactable, during the time they’re still expected to take part in study activities.

A loss of contact should not be considered the same as a participant deciding they don’t want to take part in the study anymore.

While it is possible that the participant has decided to stop responding to researcher contact because they no longer want to take part in the study, this might not be the case.

There may be other reasons why contact has been lost, and it might not be right to make a strong assumption in either direction.

Therefore, unless there is a specific reason to think it is not appropriate, reasonable attempts can be made to regain contact with the participant to find out if they are happy to make further contributions to the study.

Researchers should make a plan, with patient involvement, when they are designing the study about what they will do in this situation.

For example, they may wish to try to contact the participant directly or contact their GP to find out about their health and their whereabouts.

Any further participant contributions must only be to support the aims of the study and researchers may decide that, for their particular study, it would not be useful or appropriate to make any attempts to get back in touch with participants.

Methods to get back in touch must be carefully designed to minimise the risk that any participants perceive them as intrusive or unexpected.

Any further attempts researchers make to contact participants should still be done sensitively and without making the participant feel pressured. It is possible the participant did want to stop taking part in the study but did not feel able to express this to the researcher, for whatever reason.  

Researchers might provide a simple way for participants to communicate that they want their involvement in the study to stop, without having to discuss with anyone. This might be in the form of an email address, online form or phone number for sending a text message.

Other important considerations

In some cases, there may be evidence to suggest that the participant should not be contacted again directly (for example if it was known that their health was deteriorating quickly before they lost contact with the study). In these cases, it is still acceptable to find out what might have happened from, for example, the participant’s GP, as long as it is in line with the consent participants gave before they joined the study.

See also:

Relevant PeRSEVERE resources:

Relevant PeRSEVERE principles:

  • Researchers should make a plan when they are designing their study for how they will deal with loss of contact with participants. See principle D2 for more about this.
  • See principle D4 about the need to inform participants, before they agree to take part in a study, of what would happen if contact is lost between them and the research team.