Page 1: Participant Information Sheet (Version 1, 13/01/2021)
Study title: Exploring the barriers to research for participants from rural communities
We would like to invite you to take part in a research study exploring researchers’ perspectives on the barriers to undertaking research in rural regions of North Wales. Before you decide whether or not to take part, it is important for you to understand the purpose of the research and what it will involve for you. Please take time to read the following information carefully and discuss it with others if you wish. Please ask us if there is anything that is not clear or if you would like more information. You are free to choose whether you would like to take part.
What is the purpose of the study?
Increasing attention is being paid to the inclusion of under-represented groups in health-related research. The literature suggests that inadequate representation reduces the generalisability of any findings to the population as a whole. There are also a number of challenges to undertaking research in rural communities. Some researchers have argued that the demographics within rural communities can create inherent barriers that prevent participation in research. Factors cited include: age, poverty, poorer health and higher co-morbidities, a lower level of education and the geographic dispersion of rural communities. Equally, other researchers have argued that rural communities have less knowledge about the research process. Costs of participating, travel time, child-care arrangements and transport issues have also been articulated, along with the research-readiness of clinical staff in rural areas. Trust in researchers and the research process also appears to be important.
These factors appear to be important for the conduct of research, more broadly, and clinical trials, more specifically. As a result, it is important to understand the barriers to participating in research, the actions that can be taken to overcome those local barriers and the tools, training and resources needed to implement these actions.
We are planning to undertake a questionnaire-based study distributed to researchers in North Wales to explore their perspectives about the barriers to conducting research and clinical trials in the region.
Why have I been chosen?
You have been chosen as you are a researcher in North Wales and/or undertake research in North Wales.
Do I have to take part?
No. It is up to you to decide if you would like to take part in this study. If you do decide to take part, you will be given this information sheet to keep and you will be asked to sign a consent form. If you do decide to take part, you are still free to withdraw at any time without giving a reason.
What will happen to me if I take part?
Participating researchers will be approached by e-mail, which will contain a hyper-link to the questionnaire and a copy of the Participant Information Sheet.
On accessing the questionnaire, the first element will provide information about the study. This will be a copy of the information in the Participant Information Sheet, so that prospective participants fully understand and will be reminded of the nature of the study.
The second section of the questionnaire will ask participating researchers to provide consent for the project. This will emphasise that:
- Participation is voluntary and that consent will be assumed as a result of completing the questionnaire; and
- Data is anonymised at source so that they cannot be identified.
Given the nature of this study, participants will consent by ticking a box and will only have access to the questionnaire, once this box has been ticked.
What do I have to do?
The third section of the questionnaire will collect demographic data:
- Researcher position: Professor, Senior Lecturer, Lecturer, Research Officer
- Research area: according to the NIHR classification of health disorders
- Experience of conducting research in rural communities: yes/no
- Experience of conducting any clinical trials in rural communities: yes/no
The fourth section of the questionnaire will be structured according to the themes and sub-themes identified from the literature search. Each question will be prefaced with a short narrative explaining what we found from the literature, before asking the participant to record their own experience within research more broadly and clinical trials more specifically.
What are the benefits of taking part?
The study will help us explore researchers’ perspectives about the barriers they have faced in conducting research and clinical trials in North Wales, and what factors they have found that have influenced the uptake of research amongst potential participants across North Wales.
What are the possible disadvantages and risks of taking part?
Other than the time commitment taking part in the study, we do not anticipate there being any risks
You can withdraw from the study at any time without it affecting your legal rights, but data collected up to your point of withdrawal may be used.
If I take part, will it be confidential?
No identifiable data will be recorded by the research team.
What if there is a problem?
We do not anticipate that sensitive issues will be uncovered during data collection, given the nature of the structured questions within the questionnaire.
What will happen to the results of the research study?
The results will be published in scientific journals and presented at conferences.
The reports and presentations we write will not include personal details of the people who take part.
Who is organising and funding the study?
The study is unfunded. It is organised by the North Wales Organisation for Randomised Trials in Health Clinical Trials Unit (NWORTH CTU), based at Bangor University.
Who has reviewed this study?
The study has been reviewed by Bangor University Health Care and Medical Sciences Academic Ethics Committee.
Who can I contact for further information or if I have concerns?
Professor Paul Brocklehurst, NWORTH, Bangor University, Y Wern (Normal Site), Holyhead Road, Bangor, LL57 2PZ. Tel: 01248 383216
Thank you for your interest in the study and for taking the time to read through the information sheet.