Impact & KPIs

Retention

Retention in a clinical trial refers to the number or proportion of participants who complete the study through to the end. The ease of participation in a DCT may improve retention as continued participation may be more flexibly managed around a participant’s work and personal commitments or changing circumstances. However, with minimal or no in-person contact in a DCT, there is a risk that retention may be more challenging. Innovative solutions may be required to enhance retention. However, conversely, the ease of participation in a DCT may improve retention as continued participation may be more flexibly managed around a participant’s work and personal commitments or changing circumstances.

Recommendations

Beliefs and perceptions about the value of the research and trustworthiness of the research team are balanced against the possible burden of taking part when people decide whether to participate in a particular trial. Early involvement of patients was identified as one way to gauge participant priorities.

Make sure that participants understand fully what they are agreeing to do in the trial. Consider that participants may feel overburdened by study tasks, especially if they are unfamiliar with the technology or online interfaces used.

Minimising the number of devices and technological interfaces involved in data collection and uploading reduces the burden of trial participation. Simple DCT interfaces, such as study websites with clear directions, calls to action and concise text help to retain participants. Make it clear to participants why particular actions are required and what ‘behind-the-scenes’ activities are being carried out to achieve the study’s aims.

DCTs are particularly susceptible to misunderstandings by trial participants because there are generally fewer opportunities to check understanding and explain the rationale behind trial activities. Regular contact with participants to enquire about changes in their condition and circumstances and the creation of interactive bulletins and interfaces may help with this.

Tools or interfaces that provide immediate feedback to participants on their condition, along with regular updates on trial progress, are highly valued by DCT participants and support retention. The ability of technology-enabled DCTs to give participants useful or interesting information they would not otherwise be able to access is especially appreciated by participants.

Changes in an individual’s circumstances or values, especially during long-duration trials, may result in them choosing not to adhere to study activities or to withdraw entirely from the trial. DCTs may mitigate against such withdrawals or missing data by offering a degree of flexibility in ways to participate.

How Trials@Home reached these recommendations

We investigated best practices in DCT approaches by conducting qualitative research interviews with stakeholders involved in DCTs in more than 20 case studies of ongoing and completed DCTs. Learnings about retention were also gained from RADIAL.

Further reading

Publications

Learning from Remote Decentralised Clinical Trial (RDCT) experiences: a qualitative analysis of interviews with trial personnel, patient representatives and other stakeholders.

Coyle, et al
British Journal of Clinical Pharmacology
2021
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Read the layman version
View poster version

A secondary qualitative analysis of stakeholder views about participant recruitment, retention, and adherence in decentralised clinical trials (DCTs)

Coyle, et al
Trials
2022
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