Survey to explore colorectal cancer healthcare professionals’ experiences and opinions of lifestyle promotion

Survey to explore colorectal cancer healthcare professionals’ experiences and opinions of lifestyle promotion

Participant Information Sheet

Study Title: Survey to explore colorectal cancer healthcare professionals’ experiences and opinions of lifestyle promotion

Researcher name: Amy Din

ERGO number: 45795                                                                   

You are being invited to take part in the above research study. To help you decide whether you would like to take part or not, it is important that you understand why the research is being done and what it will involve. Please read the information below carefully and ask questions if anything is not clear or you would like more information before you decide to take part in this research.  You may like to discuss it with others but it is up to you to decide whether or not to take part. If you are happy to participate please complete the survey.

What is the research about?

This study is being undertaken as part of a PhD research project by Amy Din, and supervised by Dr Chloe Grimmett and Professor Claire Foster, at the School of Health Sciences, University of Southampton. This survey will be conducted to help identify colorectal cancer healthcare professionals’ current lifestyle promotion practices. The survey will also help to identify possible colorectal cancer healthcare professionals’ education/training needs to facilitate lifestyle change promotion to patients with colorectal cancer. The survey asks some questions about your experience and opinions of lifestyle promotion to your patients with colorectal cancer, what you already know about lifestyle, and also your experiences of training/education on lifestyle promotion.

This survey is part of one study in a research project, which aims to develop an education/training intervention for colorectal cancer healthcare professionals to help them promote lifestyle change to their patients. The intervention will be colorectal cancer-specific. We hope that the results of this survey will help to understand whether an intervention should be developed, and what that intervention may need to include or focus on. To further understand this, we have collaborated with Professor Annie Anderson and colleagues, at the University of Dundee, who previously distributed this survey in 2012. We have slightly adapted this survey and added some additional questions and response items. We would like to compare the responses from this current version of the survey with the responses from the 2012 survey. This will help us understand whether there have been any differences, and if so, what these are. 

Why have I been asked to participate?

You have been invited to participate in the study because you are a healthcare professional involved in the care of patients with colorectal cancer. This survey is part of a research project which is looking to develop an education/training intervention to support colorectal cancer healthcare professionals promote lifestyle to their patients. We would like to ask your honest opinion of lifestyle promotion and your experiences. By doing so it will help us to build a picture as to whether developing an education/training intervention is worthwhile, and if it is how we should go about it. To do this we will be carrying out several studies, including this survey.

What will happen to me if I take part?

Once you have read through this information sheet and the consent statement, please take your time to decide whether you would like to take part. It is completely up to you whether you take part in this survey or not. If you decide to take part and consent to this survey, please respond to each of the questions in the survey.

Feel free to contact Amy Din by letter, email, or by phone, if you have any questions about the survey or your participation (details at the end of this information sheet).

Please remember that this survey is not a test, there are no right or wrong answers. We just ask that if you decide to take part, to answer the questions as honestly as possible. Your responses will be kept completely confidential. The survey should take you around 30 minutes to complete.

If you are interested in being invited to participate in other research associated with this project or to possibly support our intervention design advisory committee (IDAC), there is a response option to do this at the end of the survey. Your support would be warmly welcomed.

Are there any benefits in my taking part?

There also may not be any direct benefits to you taking part. However your participation will mean that we are able to understand more about your opinions, experiences, and possibly your needs regarding lifestyle promotion to colorectal cancer patients. This may help justify whether an intervention to help colorectal cancer healthcare professionals, such as yourself, know more about lifestyle promotion is required. Also it may help to understand what the intervention should focus on or include.

Are there any risks involved?

We believe there are no known significant risks associated with this research study.

What data will be collected?

The data we will be collecting are your responses to the survey. As explained already, these are your experience and opinions of lifestyle promotion to your colorectal cancer patients, what you already know about lifestyle, and your experiences of education/training on lifestyle promotion. The survey also asks some basic demographics questions (e.g. job role, gender, age, years of practice), but does not ask your name. You will also be asked to provide your email address if you are interested in being invited to participate in other research associated with this project or to possibly support our IDAC. Therefore the data we are collecting are not classified as special category data according to Data Protection.

Your responses to the survey, including your email addresses will be stored securely on a University of Southampton password protected computer. Your data will only be handled by the research team. If you are responding to the paper-based survey, your responses will be inputted onto a database held on a password protected University of Southampton computer, and then stored in a secure locked cabinet at the University of Southampton. If you are responding to the iSurvey (online survey), your data will also be stored securely on a password protected University of Southampton computer. At the end of data collection your data will be analysed on the secure computer by the lead researcher, Amy Din. Your data (i.e. your survey responses and your email address if you provide it) will be stored for 10 years following the end of the research project. Please note that if you provide your email address to be invited to participate in other research associated with this project or to possibly support our IDAC, your contact details will be stored securely on a University of Southampton password protected computer for 10 years following the completion of the research project, and only accessed by the research team.

Will my participation be confidential?

Your participation and the data/information we collect about you during the course of the research will be kept strictly confidential. Only members of the research team (which also includes the PhD student/lead researcher, academic supervisors at the University of Southampton and an external researcher at the University of Dundee), and responsible members of the University of Southampton may be given access to data about you for monitoring purposes and/or to carry out an audit of the study to ensure that the research is complying with applicable regulations. Individuals from regulatory authorities (people who check that we are carrying out the study correctly) may require access to your data. All of these people have a duty to keep your information, as a research participant, strictly confidential.

Your responses to the survey and email address (if you chose to provide it) will be kept strictly confidential. Some of the words you use may be taken as direct quotes (exact words) and included in research reports, publications and a PhD thesis. These quotes (exact words) will be completely anonymous, and pseudonyms used, so that your responses cannot be traced back to you.

In the survey we do not ask you any identifiable information, unless you provide your email address to be invited to further research or the IDAC. All of this data will be kept on a secured password protected University of Southampton computer. All paper-based copies of the survey will be kept secured in a locked cabinet at the University of Southampton. All computer-based data will be encrypted and stored securely on a password protected University of Southampton computer.

There is an opportunity in the survey to provide your email address to be invited to participate in future research or support the IDAC. The future research, although currently still being designed, may involve interviews (such as telephone interviews), focus groups, and/or Think Aloud sessions to test an intervention. These studies will help develop an intervention that is likely to be of an education/training intervention to support healthcare professional know more about lifestyle promotion for patients with colorectal cancer. Data from these studies are likely to be audio recorded and transcribed verbatim. The data will be held on a secured password protected University of Southampton computers, and stored for 10 years following the completion of the research project. Your participation and responses will be kept strictly confidential. Some of the words you use may be taken as direct quotes (exact words) and included in research reports, publications and a PhD thesis. These quotes (exact words) will be completely anonymous, and pseudonyms used, so that your responses cannot be traced back to you.

The intervention design advisory committee (IDAC) will involve being an expert advisor (e.g. a healthcare professional with experience of patients with colorectal cancer, researcher involved in colorectal cancer research) to critically evaluate the intervention as it is developed. This may involve attending meetings or commenting on the intervention as it is under development.

Please remember that you are under no obligation to provide your email address, or to participate in future research or the IDAC even once you have given your email address.

Please note that all data will be stored for 10 years after completion of the research project, and then destroyed, in line with the University of Southampton regulations.

Do I have to take part?

No, it is entirely up to you to decide whether or not to take part. If you decide you would like to take part, you will need to read through this information sheet and the consent statement carefully, then respond to the survey. Please note that by responding to the survey you are informing us that you agree with the consent statement and provide your consent to participate.

What happens if I change my mind?

The survey is anonymous, so once you have completed the survey, unless you provide your email address to be invited to participate in future research or support the IDAC, then we are unable to trace your survey and withdraw it. However if you provide your email address we can trace you, and you can withdraw at any time without giving a reason and without your participant rights being affected, and your survey will be destroyed. Also if you decide that you no longer would like to store your email address for the purpose of being invited to participate in future research or support the IDAC, then you are able to at any time without giving a reason and without your participant rights being affected. If you choose to withdraw your survey or email address, you can contact the lead researcher, Amy Din, using the contact details at the end of this information sheet.

What will happen to the results of the research?

Your personal details will remain strictly confidential. Research findings made available in any reports, publications or the PhD thesis will not include information that can directly identify you without your specific consent.

Once the data has been analysed, if you would like a summary of the results you can contact the lead researcher, Amy Din, on the details below. 

Where can I get more information?

If you have any questions regarding this study, or anything you have read on this information sheet, please feel free to contact the lead researcher, Amy Din, on the details below:-

Lead researcher: Amy Din

Address: Building 67, School of Health Sciences, University of Southampton, University Road, Highfield, Southampton, SO17 1BJ

Email: aed3g11@soton.ac.uk

Tel: 023 8059 6885

What happens if there is a problem?

If you have a concern about any aspect of this study, you should speak to the lead researcher (Amy Din, details above) who will do her best to answer your questions.

If you remain unhappy or have a complaint about any aspect of this study, please contact the University of Southampton Research Integrity and Governance Manager (023 8059 5058, rgoinfo@soton.ac.uk).

Data Protection Privacy Notice

The University of Southampton conducts research to the highest standards of research integrity. As a publicly-funded organisation, the University has to ensure that it is in the public interest when we use personally-identifiable information about people who have agreed to take part in research.  This means that when you agree to take part in a research study, we will use information about you in the ways needed, and for the purposes specified, to conduct and complete the research project. Under data protection law, ‘Personal data’ means any information that relates to and is capable of identifying a living individual. The University’s data protection policy governing the use of personal data by the University can be found on its website (https://www.southampton.ac.uk/legalservices/what-we-do/data-protection-and-foi.page).

This Participant Information Sheet tells you what data will be collected for this project and whether this includes any personal data. Please ask the research team if you have any questions or are unclear what data is being collected about you.

Our privacy notice for research participants provides more information on how the University of Southampton collects and uses your personal data when you take part in one of our research projects and can be found at http://www.southampton.ac.uk/assets/sharepoint/intranet/ls/Public/Research%20and%20Integrity%20Privacy%20Notice/Privacy%20Notice%20for%20Research%20Participants.pdf

Any personal data we collect in this study will be used only for the purposes of carrying out our research and will be handled according to the University’s policies in line with data protection law. If any personal data is used from which you can be identified directly, it will not be disclosed to anyone else without your consent unless the University of Southampton is required by law to disclose it.

Data protection law requires us to have a valid legal reason (‘lawful basis’) to process and use your Personal data. The lawful basis for processing personal information in this research study is for the performance of a task carried out in the public interest. Personal data collected for research will not be used for any other purpose.

For the purposes of data protection law, the University of Southampton is the ‘Data Controller’ for this study, which means that we are responsible for looking after your information and using it properly. The University of Southampton will keep identifiable information about you for 10 years after the study has finished after which time any link between you and your information will be removed.

To safeguard your rights, we will use the minimum personal data necessary to achieve our research study objectives. Your data protection rights – such as to access, change, or transfer such information - may be limited, however, in order for the research output to be reliable and accurate. The University will not do anything with your personal data that you would not reasonably expect.

If you have any questions about how your personal data is used, or wish to exercise any of your rights, please consult the University’s data protection webpage (https://www.southampton.ac.uk/legalservices/what-we-do/data-protection-and-foi.page) where you can make a request using our online form. If you need further assistance, please contact the University’s Data Protection Officer (data.protection@soton.ac.uk).

Thank you.

Thank you for taking the time to read this information sheet and for considering participating in this research. If you decide to take part, we hope you find it interesting, and know that your participation means a lot to us.

 

Please read through the statements below carefully. By completing the survey you are confirming you are consenting to the following:-

  1. I have read and understood the information sheet (01/02/2019 v1.1) and have had the opportunity to think about the information and ask questions about the study
  2. I agree to take part in this research project and agree for my data to be used for the purpose of this study
  3. I understand my participation is voluntary. The survey is anonymous, so I am unable to withdraw my survey once submitted unless I provide my email address
  4. I understand some of my words or quotes (exact words) from this survey may be included in research reports, publications and a PhD thesis, and that they will be completely anonymous and I will not be identifiable
  5. I understand that the data will be stored electronically on a secure University of Southampton password protected computer, and that paper (hard) copies will be stored in a secure locked cabinet at the University of Southampton
  6. I agree to participate in this survey
  7. I understand that by responding to the survey I am agreeing to all of the above