Research output per year
Research output per year
Description
Hello,
Thanks for taking the time to click the email link to find out further information about ADIPOSE. This Participant Information Sheet has all the information you need to know to make an informed decision to join the study. Please take the time to read this before taking part. Details of who to contact if you want any more information are also below.
Once you have read this information, if you are happy to take part, please continue to complete the consent form and then the study questionnaire on the study survey.
You can also download a copy of this Participant Information Sheet from this web page.
Thanks,
ADIPOSE Study Team
Title of Study
Assessing awareness of fatty liver disease among people in Scotland: a cross-sectional survey study (ADIPOSE).
We are inviting you to take part in a study
You are being invited to participate in a research study (in the form of a questionnaire). Before you decide whether to participate, it is important for you to understand why the research is being done and what it will involve. Please take time to read the following information carefully and feel free to ask us if you would like more information or if there is anything that you do not understand. Please also feel free to discuss this with your friends, relatives or colleagues if you wish. We would like to stress that you do not have to accept this invitation and should only agree to take part if you would like to.
Why we are doing this study
Fatty liver disease is becoming more common across the world but people living with fatty liver disease are often unaware of it. We wish to understand how many people in Scotland have heard of fatty liver disease and what they know about it, particularly people who are living with diabetes or cardiovascular disease. Therefore, we are undertaking an online survey among people in Scotland living with diabetes, cardiovascular disease, and those living with neither (for comparison).
Why you have been contacted
You have been contacted to take part in this study because you previously signed up to SHARE (The Scottish Health Research Register and Biobank) and indicated you might be interested in taking part in future research. Some people who have been invited to take part in this survey are registered as living with diabetes, some with cardiovascular disease and some people are not living with either of these conditions.
Do I have to take part?
No. Participation in the study is voluntary and you are free to withdraw you participation at any time until you submit the survey. To withdraw your participation simply don't complete the survey, you are not required to give a reason for this. This will not affect your usual healthcare in any way. However, if you choose to take part and complete the survey, once your survey responses have been submitted, we will no longer be able to withdraw your responses – because the survey is anonymous it will not be possible for us to be able to identify which response is yours at that point.
What if I do not know the answers?
That is fine! There are several questions in the survey that you may not know the answer to. But what we are interested in is what people think might be the correct answers. Please try and answer any questions you are unsure of the answer to with whatever you think might be the correct answer.
What will happen if I take part?
The study is an online survey made up of one set of questions only. After finishing reading this information sheet you will be asked to review and agree to some statements making sure you understand and are happy to take part in the survey (called informed consent – essential for all research). Then you will be asked questions about yourself, such as your post code (used to calculate your Scottish Index of Multiple Deprivation), your type of job, age etc.; then some medical history questions (weight, height, whether you have been diagnosed with diabetes or other conditions etc.); and some questions about your alcohol consumption.
After this you will be presented with the fatty liver awareness survey, which consists of approximately 14 questions that aim to assess your understanding of fatty liver disease - how it is diagnosed, treated, and certain associated illnesses. Remember you do not need to know anything about fatty liver disease to take part in the survey.
Finally, you will be asked whether you want to enter a prize-draw to receive a high-street voucher in return for your participation. If you wish to do so, you will need to enter your email address (if you would rather not enter the prize-draw/ your email address you can still complete the survey without this, and we would still be pleased to have your responses).
IMPORTANTLY we will not collect your name/ DOB/ full address / contact details and so none of the questions will allow us to identify you directly. In addition, we will not have access to your health records and none of your answers will be linked to your health records or your email address (should you chose to provide it) – all answers will be completely anonymous.
How long will the ADIPOSE study take?
The study survey will take approximately 15 minutes to complete and may take less time.
Will taking part in the ADIPOSE study affect my usual care?
Participation in the study will not alter your regular healthcare.
What are the possible benefits of taking part?
Once you complete the survey, you will have the opportunity to opt-in to a draw to receive one of five high-street retail vouchers valued at £100 each. Opting into this draw is not a requirement for participation. Five participants will be drawn at random to receive one voucher each.
There are no direct health benefits to you from taking part, however it is hoped that your involvement will help contribute to the development of liver health research and the care of people with fatty liver disease in the future. You will also have the option to opt-in to information about the results and publication of this research in the future.
What are the possible disadvantages and risks of taking part?
Apart from the short amount of time it takes to fill in the survey, there are not any disadvantages or risks involved in taking part in the study.
Who is organising and funding this research?
This study is being sponsored by the University of Dundee. It is being funded by Scottish Society of Physicians. The study is being organised by Professor John Dillon.
How will my survey data be used?
We will need to use information from you (from your survey responses) for this research project.
Information from the survey will be used to measure awareness of fatty liver disease and associated medical conditions across Scotland.
Data on demographics, medical history, alcohol consumption, etc., will be used to analyse the results and enable the team to determine public health priorities.
This information will include your post code which will be used to calculate your Scottish Index of Multiple Deprivation. No other identifiable information will be included. We will not have access to your name or contact details. Your survey response data will have a code number instead.
We will keep all information about you safe and secure.
Study Results
The results from the study will be made available through the development of reports, peer-reviewed research papers, and presentations. You will not be identifiable in any of the results or any of the publications.
If you wish to receive details of how the study is progressing and research outputs, there will be an option to opt-in to this at the end of the study.
How will my data be collected?
Data will be collected via an online anonymous survey.
How will my survey response data be stored?
All data will be stored on access-protected University of Dundee servers, accessible only to the research team. Your email address will not be stored with your other responses.
How long will my survey response data be stored for?
Data will be stored for 5 years after the study is completed.
What measures are in place to protect the security and confidentiality of my data?
The study survey is conducted using the Jisc survey platform. Jisc meets International Organization for Standardization 27001 data standards and data held with the survey platform is processed in compliance with GDPR. Further information can be found about Jisc data security here: https://onlinesurveys.jisc.ac.uk/security/
Storage and usage of all data is governed by University of Dundee data protection policies, which are aligned to the General Data Protection Regulation (GDPR) and associated Standard Operation Procedures (SOP). Further information is available at: https://www.dundee.ac.uk/information-governance/data-protection.
Will my data be anonymised?
All data is stored anonymously, and it will not be possible for the research team or anyone else to identify individual ADIPOSE participants.
Who will have access to my data?
The surveys are submitted anonymously, and only the research team will have access to the completed surveys.
Will my data be archived for use in other research projects in the future?
Data collected will only be used in this project.
How will my data be destroyed?
The survey data will be securely destroyed 5 years after the survey results have been published.
Where can you find out more about how your information is used?
You can find out more about how we use your information at https://www.hra.nhs.uk/information-about-patients or by asking one of the research team by sending an email to [email protected].
What if I am unhappy or if there is a problem?
If you are unhappy, or if there is a problem, please feel free to let us know by contacting:
Primary Investigator, Dr Damien Leith ([email protected]) and we will try to help.
If you are not satisfied, you can make a formal complaint to a senior member of the research team or to the Complaints Officer for NHS Tayside:
Patient Experience Team
NHS Tayside
Ninewells Hospital
Dundee DD1 9SY
Freephone: 0800 027 5507
Email: [email protected]
If you think you have come to harm due to taking part in the study there are no automatic arrangements to get financial compensation.
If you have a complaint about your participation first of all please talk to the researcher.
If you have any concerns about the way in which your data is processed, it is important that you are aware of your right to lodge a complaint with the Information Commissioner's Office – Scotland by calling 0303 123 1115 or emailing [email protected].
Insurance
The University of Dundee is Sponsoring the study. The University of Dundee holds Clinical Trials indemnity cover which covers the University’s legal liability for harm caused to participants.
Who has reviewed this study?
This study has been reviewed by, and received favourable opinion from, the North of Scotland Research Ethics Committee.
All processes outlined in this information sheet are included in the study protocol, which was reviewed by the Research Ethics committee.
Who can I contact if I have further questions?
Principal Investigator
Dr Damien Leith
Ninewells Hospital and Medical School,
Dundee, DD2 1SY
Phone: 01382 383017
Email: [email protected]
Privacy Notice
Information Governance – Data Protection
How we use your information
If you choose to provide personal data in response to any of our questions, you should understand that we will hold and process that information in the dataset we generate from the survey responses.
We will retain the raw data from the survey responses for 5 years from the study end date, at which point it will be deleted. We will retain our anonymous analysis and reporting.
You are under no obligation to complete this survey.
Personal data
This survey will include your post code (used to calculate your Scottish Index of Multiple Deprivation) and some demographic data (age, sex, ethnicity). Should you provide additional personal data in response to any of our questions, please consider whether your responses reveal circumstances which may identify you and whether you wish to include them. Any disclosure of personal data is at your own discretion. You should restrict your answers to the matter at hand and avoid disclosing the personal data of others.
Special categories of personal data
This survey will ask for ethnicity data which is necessary for the study analysis. This is considered special category data.
Will the use of my data meet GDPR rules?
GDPR stands for the General Data Protection Regulation. In the UK we follow the GDPR rules and have a law called the Data Protection Act. All research using patient data must follow UK laws and rules. Universities, NHS organisations and companies may use patient data to do research to make health and care better.
Universities and the NHS are funded from taxes and they are expected to do research as part of their job. They still need to be able to prove that they need to use patient data for the research. In legal terms this means that they use patient data as part of ‘a task in the public interest’.
Data controller
Should you provide personal data in response to this survey the University of Dundee would be the data controller for this information. This data may be processed by the University’s nominated agents such as software or service providers. Data will be processed using the University’s business systems. These include Microsoft 365 and Microsoft OneDrive.
The University uses an online survey run by Jisc to collect this information. For information on how this service secures your data please see https://www.jisc.ac.uk/online-surveys.
Lawful processing
If you choose to provide personal data in response to our questions, it will be processed by the University on the basis that it is lawful for it to process your personal data, as the processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the University as data controller.
Your rights
If you wish to complain about the University’s use of your information, please contact the University’s Data Protection Officer in the first instance by emailing [email protected]. You may also wish to contact the Information Commissioner’s Office.
Thanks for taking the time to click the email link to find out further information about ADIPOSE. This Participant Information Sheet has all the information you need to know to make an informed decision to join the study. Please take the time to read this before taking part. Details of who to contact if you want any more information are also below.
Once you have read this information, if you are happy to take part, please continue to complete the consent form and then the study questionnaire on the study survey.
You can also download a copy of this Participant Information Sheet from this web page.
Thanks,
ADIPOSE Study Team
Title of Study
Assessing awareness of fatty liver disease among people in Scotland: a cross-sectional survey study (ADIPOSE).
We are inviting you to take part in a study
You are being invited to participate in a research study (in the form of a questionnaire). Before you decide whether to participate, it is important for you to understand why the research is being done and what it will involve. Please take time to read the following information carefully and feel free to ask us if you would like more information or if there is anything that you do not understand. Please also feel free to discuss this with your friends, relatives or colleagues if you wish. We would like to stress that you do not have to accept this invitation and should only agree to take part if you would like to.
Why we are doing this study
Fatty liver disease is becoming more common across the world but people living with fatty liver disease are often unaware of it. We wish to understand how many people in Scotland have heard of fatty liver disease and what they know about it, particularly people who are living with diabetes or cardiovascular disease. Therefore, we are undertaking an online survey among people in Scotland living with diabetes, cardiovascular disease, and those living with neither (for comparison).
Why you have been contacted
You have been contacted to take part in this study because you previously signed up to SHARE (The Scottish Health Research Register and Biobank) and indicated you might be interested in taking part in future research. Some people who have been invited to take part in this survey are registered as living with diabetes, some with cardiovascular disease and some people are not living with either of these conditions.
Do I have to take part?
No. Participation in the study is voluntary and you are free to withdraw you participation at any time until you submit the survey. To withdraw your participation simply don't complete the survey, you are not required to give a reason for this. This will not affect your usual healthcare in any way. However, if you choose to take part and complete the survey, once your survey responses have been submitted, we will no longer be able to withdraw your responses – because the survey is anonymous it will not be possible for us to be able to identify which response is yours at that point.
What if I do not know the answers?
That is fine! There are several questions in the survey that you may not know the answer to. But what we are interested in is what people think might be the correct answers. Please try and answer any questions you are unsure of the answer to with whatever you think might be the correct answer.
What will happen if I take part?
The study is an online survey made up of one set of questions only. After finishing reading this information sheet you will be asked to review and agree to some statements making sure you understand and are happy to take part in the survey (called informed consent – essential for all research). Then you will be asked questions about yourself, such as your post code (used to calculate your Scottish Index of Multiple Deprivation), your type of job, age etc.; then some medical history questions (weight, height, whether you have been diagnosed with diabetes or other conditions etc.); and some questions about your alcohol consumption.
After this you will be presented with the fatty liver awareness survey, which consists of approximately 14 questions that aim to assess your understanding of fatty liver disease - how it is diagnosed, treated, and certain associated illnesses. Remember you do not need to know anything about fatty liver disease to take part in the survey.
Finally, you will be asked whether you want to enter a prize-draw to receive a high-street voucher in return for your participation. If you wish to do so, you will need to enter your email address (if you would rather not enter the prize-draw/ your email address you can still complete the survey without this, and we would still be pleased to have your responses).
IMPORTANTLY we will not collect your name/ DOB/ full address / contact details and so none of the questions will allow us to identify you directly. In addition, we will not have access to your health records and none of your answers will be linked to your health records or your email address (should you chose to provide it) – all answers will be completely anonymous.
How long will the ADIPOSE study take?
The study survey will take approximately 15 minutes to complete and may take less time.
Will taking part in the ADIPOSE study affect my usual care?
Participation in the study will not alter your regular healthcare.
What are the possible benefits of taking part?
Once you complete the survey, you will have the opportunity to opt-in to a draw to receive one of five high-street retail vouchers valued at £100 each. Opting into this draw is not a requirement for participation. Five participants will be drawn at random to receive one voucher each.
There are no direct health benefits to you from taking part, however it is hoped that your involvement will help contribute to the development of liver health research and the care of people with fatty liver disease in the future. You will also have the option to opt-in to information about the results and publication of this research in the future.
What are the possible disadvantages and risks of taking part?
Apart from the short amount of time it takes to fill in the survey, there are not any disadvantages or risks involved in taking part in the study.
Who is organising and funding this research?
This study is being sponsored by the University of Dundee. It is being funded by Scottish Society of Physicians. The study is being organised by Professor John Dillon.
How will my survey data be used?
We will need to use information from you (from your survey responses) for this research project.
Information from the survey will be used to measure awareness of fatty liver disease and associated medical conditions across Scotland.
Data on demographics, medical history, alcohol consumption, etc., will be used to analyse the results and enable the team to determine public health priorities.
This information will include your post code which will be used to calculate your Scottish Index of Multiple Deprivation. No other identifiable information will be included. We will not have access to your name or contact details. Your survey response data will have a code number instead.
We will keep all information about you safe and secure.
Study Results
The results from the study will be made available through the development of reports, peer-reviewed research papers, and presentations. You will not be identifiable in any of the results or any of the publications.
If you wish to receive details of how the study is progressing and research outputs, there will be an option to opt-in to this at the end of the study.
How will my data be collected?
Data will be collected via an online anonymous survey.
How will my survey response data be stored?
All data will be stored on access-protected University of Dundee servers, accessible only to the research team. Your email address will not be stored with your other responses.
How long will my survey response data be stored for?
Data will be stored for 5 years after the study is completed.
What measures are in place to protect the security and confidentiality of my data?
The study survey is conducted using the Jisc survey platform. Jisc meets International Organization for Standardization 27001 data standards and data held with the survey platform is processed in compliance with GDPR. Further information can be found about Jisc data security here: https://onlinesurveys.jisc.ac.uk/security/
Storage and usage of all data is governed by University of Dundee data protection policies, which are aligned to the General Data Protection Regulation (GDPR) and associated Standard Operation Procedures (SOP). Further information is available at: https://www.dundee.ac.uk/information-governance/data-protection.
Will my data be anonymised?
All data is stored anonymously, and it will not be possible for the research team or anyone else to identify individual ADIPOSE participants.
Who will have access to my data?
The surveys are submitted anonymously, and only the research team will have access to the completed surveys.
Will my data be archived for use in other research projects in the future?
Data collected will only be used in this project.
How will my data be destroyed?
The survey data will be securely destroyed 5 years after the survey results have been published.
Where can you find out more about how your information is used?
You can find out more about how we use your information at https://www.hra.nhs.uk/information-about-patients or by asking one of the research team by sending an email to [email protected].
What if I am unhappy or if there is a problem?
If you are unhappy, or if there is a problem, please feel free to let us know by contacting:
Primary Investigator, Dr Damien Leith ([email protected]) and we will try to help.
If you are not satisfied, you can make a formal complaint to a senior member of the research team or to the Complaints Officer for NHS Tayside:
Patient Experience Team
NHS Tayside
Ninewells Hospital
Dundee DD1 9SY
Freephone: 0800 027 5507
Email: [email protected]
If you think you have come to harm due to taking part in the study there are no automatic arrangements to get financial compensation.
If you have a complaint about your participation first of all please talk to the researcher.
If you have any concerns about the way in which your data is processed, it is important that you are aware of your right to lodge a complaint with the Information Commissioner's Office – Scotland by calling 0303 123 1115 or emailing [email protected].
Insurance
The University of Dundee is Sponsoring the study. The University of Dundee holds Clinical Trials indemnity cover which covers the University’s legal liability for harm caused to participants.
Who has reviewed this study?
This study has been reviewed by, and received favourable opinion from, the North of Scotland Research Ethics Committee.
All processes outlined in this information sheet are included in the study protocol, which was reviewed by the Research Ethics committee.
Who can I contact if I have further questions?
Principal Investigator
Dr Damien Leith
Ninewells Hospital and Medical School,
Dundee, DD2 1SY
Phone: 01382 383017
Email: [email protected]
Privacy Notice
Information Governance – Data Protection
How we use your information
If you choose to provide personal data in response to any of our questions, you should understand that we will hold and process that information in the dataset we generate from the survey responses.
We will retain the raw data from the survey responses for 5 years from the study end date, at which point it will be deleted. We will retain our anonymous analysis and reporting.
You are under no obligation to complete this survey.
Personal data
This survey will include your post code (used to calculate your Scottish Index of Multiple Deprivation) and some demographic data (age, sex, ethnicity). Should you provide additional personal data in response to any of our questions, please consider whether your responses reveal circumstances which may identify you and whether you wish to include them. Any disclosure of personal data is at your own discretion. You should restrict your answers to the matter at hand and avoid disclosing the personal data of others.
Special categories of personal data
This survey will ask for ethnicity data which is necessary for the study analysis. This is considered special category data.
Will the use of my data meet GDPR rules?
GDPR stands for the General Data Protection Regulation. In the UK we follow the GDPR rules and have a law called the Data Protection Act. All research using patient data must follow UK laws and rules. Universities, NHS organisations and companies may use patient data to do research to make health and care better.
Universities and the NHS are funded from taxes and they are expected to do research as part of their job. They still need to be able to prove that they need to use patient data for the research. In legal terms this means that they use patient data as part of ‘a task in the public interest’.
Data controller
Should you provide personal data in response to this survey the University of Dundee would be the data controller for this information. This data may be processed by the University’s nominated agents such as software or service providers. Data will be processed using the University’s business systems. These include Microsoft 365 and Microsoft OneDrive.
The University uses an online survey run by Jisc to collect this information. For information on how this service secures your data please see https://www.jisc.ac.uk/online-surveys.
Lawful processing
If you choose to provide personal data in response to our questions, it will be processed by the University on the basis that it is lawful for it to process your personal data, as the processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the University as data controller.
Your rights
If you wish to complain about the University’s use of your information, please contact the University’s Data Protection Officer in the first instance by emailing [email protected]. You may also wish to contact the Information Commissioner’s Office.
| Date made available | 26 Mar 2024 |
|---|---|
| Publisher | University of Dundee |
| Date of data production | 6 Mar 2024 |
Research output
- 1 Other contribution
-
Assessing awareness of fatty liver disease among people in Scotland: a cross-sectional survey study (ADIPOSE)
Byrne, C., Brennan, P., Leith, D., Barrett, R. & Dillon, J., 29 Oct 2024, 24 p. University of Dundee.Research output: Other contribution
Open AccessFile