Background
Methods
Establishing the Steering Group
Identifying and inviting potential partners
Identifying and engaging the stakeholders
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Members of the public who had been invited to participate in a randomised trial or participated in Trial Steering Committees (TSCs). They could be an individual or representing a patient organisation;
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Front line clinical and research staff who were or had been involved in recruitment to randomised trials (e.g. postdoctoral researchers, clinicians, nurses, midwives, allied health professionals);
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People who had established expertise in designing, conducting, analysing and reporting randomised trials (e.g. Principal Investigators/Chief Investigators);
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People who are familiar with the trial methodology research landscape (e.g. funders, programme managers, network coordinators).
Initial survey development and deployment
1 | What questions or comments do you have (if any) about improving how trials are planned and designed? |
2 | What questions or comments do you have (if any) about improving how trials are carried out? |
3 | What questions or comments do you have (if any) about the information people are given when they join a trial? |
4 | What questions or comments do you have (if any) about trial recruiters who invite people to take part? |
5 | What questions or comments do you have (if any) about the motivation of people in joining a trial? |
6 | Do you have any other questions or comments? |
Collating and analysing initial survey responses and developing questions
Development of the interim survey
Survey dissemination and promotion
Voting and ranking survey items
Priority setting workshop
Results
Initial survey
Completeness of initial survey
Demographic questions | Number | Completed (%) |
---|---|---|
Consent to participate (yes) | 790 | 100% |
Age (scale) | 777 | 98% |
Respondent’s role in trials | 717 | 91% |
Where respondent lives | 720 | 91% |
Gender | 711 | 90% |
Affiliated trial subject | 711 | 90% |
Wish to be involved in future research (yes/no) | 713 | 90% |
Specific open-ended feedback questions | ||
“How trials are planned and designed” | 382 | 48% |
“How trials are carried out” | 350 | 44% |
“Information people are given when they join a trial” | 359 | 45% |
“Trial recruiters who invite people to take part” | 291 | 37% |
“The motivation of people in joining a trial” | 314 | 40% |
“Other questions or comments” | 149 | 19% |
Demographic information – initial survey
Which one of the following best describes your main role in a randomised trial? | ||
---|---|---|
Answer options | Number | Percentage |
A person invited to take part in a trial | 83 | 12 |
A researcher involved in recruiting participants | 154 | 21 |
A non-researcher (e.g. clinician or health professional) involved in recruiting participants | 77 | 11 |
A principal/chief investigator | 124 | 17 |
A researcher involved in aspects of the trial other than frontline recruitment | 183 | 26 |
A trial methodologist (someone who specializes in the methods of how trials are designed, run, analysed and reported) | 87 | 12 |
Other (please specify) | 9 | 1 |
Totala | 717 | 100 |
Trial subject area | Number | Percentage |
---|---|---|
Oncology/haematology – cancer | 142 | 20 |
Neurology – neurodegenerative diseases, vascular Diseases | 93 | 13 |
Cardiovascular diseases | 44 | 6 |
Mental health | 42 | 6 |
Metabolism – diabetes mellitus | 38 | 5 |
Orthopaedics/musculoskeletal | 34 | 5 |
Reproductive Health | 34 | 5 |
Gastroenterology – hepatology, nephrology | 29 | 4 |
Paediatrics/neonates | 22 | 3 |
Respiratory | 20 | 3 |
Inflammatory conditions (e.g. osteoarthritis, rheumatoid arthritis, fibromyalgia) | 15 | 2 |
Surgery | 15 | 2 |
Ophthalmology | 14 | 2 |
Vaccines – preventive vaccines | 13 | 2 |
Dementia/ageing | 12 | 2 |
Infectious diseases | 9 | 1 |
Dermatology | 7 | 1 |
Palliative care | 4 | 1 |
Involved in multiple trials | 38 | 5 |
Other | 79 | 11 |
Totala | 704 | 100% |
Initial survey responses, collating themes and merging questions
Interim survey
Completeness of interim survey
Demographic information – interim survey
Which one of the following best describes your main role in a randomised trial? | ||
---|---|---|
Answer options | Number | Percentage |
A person invited to take part in a trial | 108 | 13 |
A researcher involved in recruiting participants | 146 | 18 |
A non-researcher (e.g. clinician or health professional) involved in recruiting participants | 63 | 8 |
A principal / chief investigator | 186 | 23 |
A researcher involved in aspects of the trial other than frontline recruitment | 206 | 25 |
A trial methodologist (someone who specialises in the methods of how trials are designed, run, analysed and reported) | 90 | 11 |
Other | 3 | < 1 |
Total | 802 | 98 |
Trial subject area | Number | Percentage |
---|---|---|
Oncology/haematology – cancer | 161 | 21 |
Neurology – neurodegenerative diseases, vascular diseases | 77 | 10 |
Cardiology – cardiovascular disease | 62 | 8 |
Orthopaedics/musculoskeletal | 56 | 7 |
Mental health | 51 | 7 |
Metabolism – diabetes mellitus | 47 | 6 |
Vaccines – preventive vaccines | 45 | 6 |
Reproductive health | 33 | 4 |
Critical care | 24 | 3 |
Infectious diseases | 21 | 3 |
Gastroenterology – hepatology, nephrology | 18 | 2 |
Surgery | 16 | 2 |
Respiratory | 15 | 2 |
Paediatrics/neonates | 13 | 2 |
Inflammatory conditions (e.g. osteoarthritis, rheumatoid arthritis, fibromyalgia) | 11 | 1 |
Ophthalmology | 9 | 1 |
Involved in multiple trials | 34 | 4 |
Other | 82 | 11 |
Totala | 785 | 96 |
Interim survey ranking
Final prioritization workshop
Overall ranking | Uncertainty as research question |
---|---|
1 | How can randomised trials become part of routine care and best utilise current clinical care pathways? |
2 | What information should trialists communicate to members of the public who are being invited to take part in a randomised trial in order to improve recruitment to the trial? |
3 | Does patient/public involvement in planning a randomised trial improve recruitment? |
4 | What are the best approaches for designing and delivering information to members of the public who are invited to take part in a randomised trial? |
5 | What are the barriers and enablers for clinicians/healthcare professionals in helping conduct randomised trials? |
6 | What are the key motivators influencing members of the public’s decisions to take part in a randomised trial? |
7 | What are the best approaches to ensure inclusion and participation of under-represented or vulnerable groups in randomised trials? |
8 | What are the best ways to predict recruitment rates to a randomised trial and what impact do such predictions have on recruitment? |
9 | What are the best approaches to optimise the informed consent process when recruiting participants to randomised trials? |
10 | What are the advantages and disadvantages to using technology during the recruitment process? |