Table 6 ‘Summary of impacts on study design’
From: Involving elderly research participants in the co-design of a future multi-generational cohort study
Impact on planned research | Summary of impact |
|---|---|
1: Recruitment and sample collection | Recruitment and consent for the MGRS will occur online wherever possible, and saliva samples (rather than blood) will be sent by post to be used as biospecimens for DNA analysis. |
2: Participant communication | A short video and ‘information pack’, which will explain the MGRS study, will be created to assist with recruiting family members. |
3: Participant involvement in governance | Participants will be invited to be involved in overseeing governance, including funding decisions. |
4: Data access | Study participants should be involved in controlling data access decisions and policies. |
5: Communication and ways of involving participants | Participants will be included on study advisory groups, including for study recruitment and communication, data access and ethical oversight using multiple communication modes. |
6: Provide feedback to participants about the research | Participants will be informed about the impact of the research, and how their involvement has affected the design and management of the study. |
7: Create learning and development opportunities | Learning and development opportunities will be created for potential participants (developing knowledge of research), researchers (developing skills in involving people) and other stakeholders. |