Participants should be informed, before they consent to join a study, about what will happen if contact is lost during the study.
If any participants might feel that the ways that researchers may try to get back in touch are intrusive, participants should have the chance to provide freely-given, informed consent to allow these contact methods to go ahead.
Researchers may not carry out these attempts at further contact if participants have not given consent.
While some study participants actively say they no longer want to participate, others more passively lose contact with the researchers by missing visits, not returning questionnaires or not answering calls, letters or emails.
This may be a sign that they do not want to take part anymore. However, it might also be due to changes in a range of personal circumstances, for example moving home, or developing new physical or mental health problems.
When they are designing a study, researchers should decide, with patient involvement, what they will do in this situation.
Before potential participants agree to join a study it is important they know what activities will continue unless they ask for them to stop, for example data being taken straight from medical records.
The information given to participants should contain clear information about how to get back in touch with the researchers, so that this is easy for participants to do, if they want to do it.
This can include more than one way of getting in touch with the researchers, in case participants prefer a particular method of contact.
It could also include more than one person’s details, in case the participant would like to speak with someone outside the main research team, for any reason.
Researchers might also 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.
If applicable, participants should also be told how the researchers might try to regain contact with them. This might include using a different contact method (telephone, mail and so on), contacting the participant’s GP, or contacting family, friends or caregivers (if they have agreed to be contacted).
Some methods of trying to regain contact may require participants to give consent first, if these methods could be considered by any participants to be intrusive. Ethics committees can advise on which ways of making contact might require participants’ consent.
Relevant PeRSEVERE resources:
- Go to patient information, participant communication and consent for more guidance on this topic.
- See training and support for how to support research staff involved in informing patients or research participants.
Relevant PeRSEVERE principles:
- Loss of contact between participants and researchers is not the same as participants saying they want to stop participating. See principle O4 for more about this.
- Participants should be made aware, before they agree to take part, that data collection will continue until they say they want it to stop. See principles O5 and D3 for more about this.
- Study protocols should include a plan for what action to take if researchers and participants lose contact. See principle D2 for more on this.
- Participants should be encouraged to discuss with the researchers if they are having problems taking part in the study, or if they know about something that might prevent them taking part until the end of the study. See principle D5 for more about this.
- Researchers should be adequately trained and supported to deal with situations where contact is lost. See principle D6 for more about this.
- Researchers with responsibility for overseeing the progress of a study should keep an eye on the number of cases of lost contact, to see if any changes might be needed to the way the study is run. See principle M2 for more on this.