Further information about your involvement is given below.
We are carrying out this project to try to discover the top ten research priorities for global burns care. We want to give a louder voice to patients, carers and clinicians in research. We would like to invite you to take part in this survey, which will help us find out what burns care research should focus on.
What is a ‘research priority’?
A research priority is a question, concern, interest, or uncertainty you have about any aspect of burns care and treatment that has not already been answered by research which you think is important. We want to hear about your experiences of burns care – tell us something that’s important to you, that you don’t know the answer to. Your first-hand experience in these matters will help us understand the top priorities for research into burns care. Potential priorities could be: Which type of dressings are best? What kind of follow-up treatment is most helpful? How do we deal with visible scars?
By finding out what areas of research are a priority to you we can use the funding for burn research in the best way.
Why have I been invited to participate?
We want to hear from you if you are:
- A patient or survivor of a thermal burn (a burn caused by heat or flame, contact or scalds, not burns caused by electricity or chemicals)
- The carer of a patient or survivor of a thermal burn (a burn caused by heat or flame, contact or scalds not burns caused by electricity or chemicals)
- A healthcare professional involved in any aspect of thermal burns care and treatment
Before you decide whether to take part, we would like you to read the following information. You can talk to other people about it before you decide, and if you have any questions, we are happy to discuss these with you.
What is this survey for?
Our aim is to understand patient and clinicians’ views and questions about burns treatment. Understanding these views and questions will help us to identify what research needs to be done to improve burns treatment. Your views and opinions will help us identify these research priorities. Your first-hand experience in these matters will help us understand the top priorities for research into burns care. Potential priorities could be:
Do I have to take part?
Taking part in the survey is entirely voluntary and your answers will be anonymous and confidential. This means that we won’t be able to identify you from your responses. If you choose to provide us with an email address, this will be stored separately to your responses, and we will not be able to link them.
What will happen to me if I take part and what will I have to do?
If you choose to take part, we will ask you to complete a short online survey. You will be asked some basic questions about yourself, such as location, age and gender. If you are a burns healthcare professional, we will ask you what your clinical role is. You will then be asked to tell us what areas of burns care and treatment are most important to you.
We do not anticipate there being any disadvantages or benefits involved in you taking part in this project, although contributing to this project will benefit patients in focussing research on the most important areas of burn care.
We will ask you if you would like to be contacted later in the project to take part in a second survey. In the second survey we will ask you to pick the ten most important research priorities from a long list. If you would like to take part in the second survey, please provide us with an email address. This email address will be stored separately to your responses, and we won’t be able to link them.
Because your responses to the survey are completely anonymous and any email address you provide will be stores separately, we will not be able to identify your data if you later wish to withdraw it from the project.
Will my participation in this project be kept confidential?
Your involvement in this survey will be anonymous and kept confidential. This means no one will know you’ve taken part unless you tell them. Data collected from the survey will be stored securely and confidentially and only members of the research team will be able to access it. If you choose to provide us with an email address, this will be stored separately to your responses, and we won’t be able to link them. We will store your email address securely for five years.
At the end of the project, survey responses will be anonymised – this means that any information that could identify you will be removed from your responses. Anonymised data will then be made available as ‘open data’, which means that it will be stored in a publicly accessible database hosted by the University of Bristol. It will not be possible to identify you from this data.
What will happen to the results of the research project?
The results of this project will inform future research for global burns care, and make sure the questions being researched are important to patients, carers and healthcare providers. We will publish our results in research journals and we will present our findings at meetings and conferences. When we publish our findings we may use some direct quotations from people’s survey responses, but no one will be able to identify who the quote has come from. The anonymised data will be made available as ‘open data’ in a publicly accessible database and may be used for purposes unrelated to this project. It will not be possible to identify you from this data.
We will share the results of this project with our global partners in burns care and support by social media, email and newsletters. You should be able to find out about our results in the same place you found out about this survey.
Who is organising, funding and reviewing the research?
This project has been funded by the National Institute for Health Research (NIHR) and is led by the University of Bristol and the James Lind Alliance. The NIHR and the University of Bristol Faculty of Health Sciences Research Ethics Committee has reviewed this project.
Further information and contact details
If you would like further information about the project you can read about it at our website:
You can follow us or contact us on Twitter: @burnspriorities
Or you can email the research team at firstname.lastname@example.org
If you have any concerns about your participation in this project, you can contact the Faculty of Health Science Research Ethics Committee, via the Research Governance Team, email@example.com