Table 2 Key themes of (a) advantages and (b) disadvantages of remote trial delivery from the patient and carer perspective, with example extracts from the survey
(a) Advantages of remote trial delivery | |
Time | “can complete in own time” “better for working age participants as saves time” “less time waiting around” “have time to consider answers” “no time pressures” “less disruption to carers” “don’t have to rearrange childcare” |
Feeling safe | “less anxiety for him” “reduced risk of COVID infection” “feeling of safety not going into hospital” “relaxed when dealing with researchers” “in my own comfort zone” “less stress about the appointment so anxiety levels lower” |
Travel and transport | “convenience of not travelling” “no parking problems” “no stress getting to appointments on time” “no travel prep or stress so clearer results for researchers (meaning assessment is not of the travel stress but of his actual condition)” |
Accessibility | “being able to join in when there may not be much research happening nearby” “being able to do the study anywhere in the country” “rapid response to any problems arising” “good for people who can’t go out” “can still contribute” “can take part 24/7” |
(b) Disadvantages of remote trial delivery | |
Inclusivity | “may exclude certain groups in the population” “patient participants rarely representative of all social & cultural groups” |
IT | “some glitches” “accessing the website wasn’t easy” “wifi is terrible (rural)” “not used to technology” |
Communication | “(missed) seeing peoples’ full body language” “difficult to hear” “it needs to be easy enough to understand and follow remotely” “you don’t get contact…chat and fun with the nurses” |
Validity | “not sure how the assessment scores compared to those face to face” “unable to collect most of the study outcomes” “the telephone follow-up was perfunctory” “questionnaires repeated often – no change to report – difficult to be consistent” “If treatment or medication was being assessed I’d prefer face to face contact” |
Support | “difficult to get help with tasks” “not having anyone to contact in the event of a problem” “I didn’t feel particularly supported” “any questions arising had to be raised at a later date” “lack of potential support” “nobody to answer questions or provide help in case of problems” |
Value | “feeling like a number in a study so not feeling valued as a participant” “impersonal” |