Endometriosis Information Online Survey
Participant Information Sheet 19.03.2019

Research Project Title:
To what extent does the information found on the internet help with the diagnostic and treatment process of endometriosis.

My name is Kathleen King, I am a student on the MSc in Health Informatics with The University of Sheffield. I work as a Medical Scientist in a hospital laboratory and as a volunteer (Chairperson) with the Endometriosis Association of Ireland. This research project will form part of an assessment for my third year in the MSc in Health Informatics.

You are being invited to take part in a research study. Prior to deciding if you would like to take part, it is important to understand why this research is being done and what your participation will involve. Taking part in this research is voluntary and you are under no obligation to participate. Thank you for taking time to read this information.


What is the purpose of this study?
The purpose of this research project is to find out about the influence of information found on the internet on those affected by endometriosis and endometriosis symptoms. This study aims to evaluate the impact of this information on diagnosis of endometriosis and also the treatment choices made by those living with the condition.

The information you feedback will be invaluable in helping me to establish the influence (if any) of the information found on the internet in terms of recognition of endometriosis, diagnosis of endometriosis and treatment choices related to endometriosis.

This study may help inform future information on the internet about endometriosis and in turn help those affected by the condition to determine the quality of information found online.

Who should take part?

This study will focus on those with suspected endometriosis and those diagnosed with endometriosis, both surgically and presumptively (by doctor without surgery). If you meet these criteria your feedback will be important for this study.

Your frequency and level of internet usage is not important, but it is essential that you have researched endometriosis online at some point in your journey.

Do I have to take part?
Your participation is entirely voluntary. It is up you to decide whether or not to take part. You should read through this information sheet carefully to see what is involved in the study.

If you choose to take part in the online survey only, no identifiable data will be recorded.
If you choose to take part in both the online survey and interview your email address will be recorded to enable contact to set up the interview.

If you decide to take part in the online survey only, you can withdraw from the study at any time without giving a reason. Your responses will not be saved.

If you decide to take part in the online survey and interview, you can withdraw from the study at any time without giving a reason. To remove yourself you can email me on kmking1@sheffield.ac.uk

What happens if I decide to take part?

If you decide to take part in the online survey, you will answer questions online (smartphone/tablet/computer) this will take approximately 25 minutes. Your responses will be anonymous.

If you decide to take part in the additional interview, you can indicate this at the end of your online survey. You will then be invited to take part in an interview to talk about your endometriosis and your use of the Internet around endometriosis. This will last between 30 and 45 minutes. The interview will be informal, I will ask you a range of questions and you will be able to stop at any time. You do not have to answer any questions that you do not wish to answer.

The interview will be audio recorded so that I can fully listen to your replies and type up the notes to fully reflect your views. The recording is to ensure accuracy and no other use will be made of them without your expressed permission. You will not be identified in the final report.

The interview will take place by face to face or phone/video call, whichever is easier for you. I will arrange a mutually suitable date and time with you. You can indicate your preferred means of communication (Phone, Skype, WhatsApp, Google Hangout)

Are there any benefits to my participation?
There are no direct benefits to your participation in this study. However, you may find it a positive experience to have your opinion heard. Taking part will give me an overview of the views and experiences of those living with endometriosis, and may lead to further research on the topic of endometriosis information on the internet.

Are there any risks involved in participating?
There are no known risks associated with participating. Everyone who takes part in the study will remain anonymous in the final report.
Interviews will be arranged at a time that is convenient to you. You can stop taking part in the study at any time and you do not have to answer any questions that you do not want to.

Some may find it distressing to discuss their experiences with endometriosis and the information they have found on the internet surrounding their condition. You do not have to discuss any issues that you do not feel comfortable with. Further information and details of local support organisations will be made available at the end of the online questionnaire.

What happens if I do not want to take part?
If you do not want to take part in this study, no further action will be taken. You can close this browser window and no details will have been recorded.

If you have completed the online survey, and wish to withdraw your interest in participating in the interview, you can email me on kmking1@sheffield.ac.uk and I will remove you from the list.

If you have been chosen to participate in an interview, but wish to withdraw you can inform me by email to kmking1@sheffield.ac.uk you can also make this known during the interview and we can close the call.

Will my taking part in the study be kept confidential?

All the information that collected during the course of the research will be kept strictly confidential and will only be accessible to members of the research team. You will not be able to be identified in any reports or publications unless you have given your explicit consent for this. All data will be stored electronically in a secure online server facilitated by the University of Sheffield.

What is the legal basis for processing my personal data?
According to data protection legislation, we are required to inform you that the legal basis we are applying in order to process your personal data is that ‘processing is necessary for the performance of a task carried out in the public interest’ (Article 6(1)(e)). Further information can be found in the University’s Privacy Notice https://www.sheffield.ac.uk/govern/data-protection/privacy/general


What will happen to the results of the research?
Results from the study will be stored electronically and any identifiable information (email addresses) removed prior to analysis. The video/audio recordings of the one to one interviews will be transcribed into text and anonymised (names and locations will be changed). This data will only be kept until the project is completed. When this data is analysed the report is submitted to assessors at the University of Sheffield for consideration in the award of an MSc. The results may be published in scientific journals or presented at endometriosis conferences. It is important to share the findings of this study to help researchers and health professionals understand the role that the Internet plays in those living with endometriosis.

Due to the nature of this research it is very likely that other researchers may find the data collected to be useful in answering future research questions. We will ask for your explicit consent for your data to be shared in this way.

In the absence of further studies, all data collected will be destroyed within 1 month of receipt of a marking grade from the University of Sheffield.

Who is organising and funding the research?
There is no funding associated with this project.

Who is the Data Controller?
The University of Sheffield will act as the Data Controller for this study. This means that the University is responsible for looking after your information and using it properly.

Who has ethically reviewed the project?
This project has been ethically approved via the University of Sheffield’s Ethics Review Procedure, as administered by Information School department.

What if something goes wrong and I wish to complain about the research?
If you are unhappy with any part of this process, you may get in touch with me directly or my supervisor Dr Laura Sbaffi. If you feel that your complaint has not been sufficiently addressed, your complaint will be addressed by the Head of Department for the Information School.

If your complaint relates to how the your personal data has been handled, information about how to raise a complaint can be found in the University’s Privacy Notice: https://www.sheffield.ac.uk/govern/data-protection/privacy/general.

Contact for further information
Kathleen King - Researcher/Student kmking1@sheffield.ac.uk

Dr Laura Sbaffi - Supervisor l.sbaffi@sheffield.ac.uk


What do I need to do next?
You can click continue below to begin the online survey. If you wish to participate in a further interview, you can indicate this at the end of the questionnaire.

Thank you very much for taking the time to read this information sheet and for your consideration of this study.

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