A chance to be a part of an eczema study!
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A chance to be a part of an eczema study!
Hi guys!
This is to inform you all that there is a short study that will be conducted on the 'general discussions' of eczema in this forum. I will be very grateful if you become a part of this study.
However, it is totally alright if you do not want to participate and you can notify me about it.
Here is the information sheet of the study- it contains every thing that you may what to know about this study. Please take some time to go through.
And here I am, always, to answer any queries or clear any doubts regarding it. So please do not hesitate to contact me.
Many thanks to you all!
************************************************************************************************************************
Information Sheet for the Participants of the forum
Title of study: Understanding the Self-management of Atopic Eczema through Online Health forums: A qualitative study
We would like to let you know that a research study is taking place on Talkeczema. The information below will help you to understand the nature of this study and what you can do if you do not want your forum posts to be included in the research. Please take time to read the following information carefully. Ask us if there is anything that is not clear or if you would like more information.
What is the purpose of the study?
We wish to understand how adults seek help for and discuss the management of their eczema through online internet forums. We are doing this study because there is little understanding of how people manage eczema in their everyday lives, and discussions on internet forums will provide vital insight into these processes. Talkeczema has agreed to allow the researcher to analyse the content of its forum discussions which relate to the self-management of adult eczema.
What will happen in the study?
The researcher will register with the forum. She will then search for and download content from the discussions relating to the self-management of adult eczema which was posted between January 1st 2016 till June 30th 2018 under the ‘general discussions’ section. Any content which involves queries by carers, participants under the age of 18 years, or pertaining to childhood eczema will not be included in our study. The downloaded content will then be anonymised (e.g. changing or obscuring the names of users).The researcher shall not interact with the forum participants in any manner. The content of the forum will be accessed online by the researcher and will be collected as posted by the users.
What should I do if I wish to opt out?
The moderators of Talkeczema have agreed to the forum being used in the study, however participants on the forum can opt out of the study if they do not want their posts to be used for the study. If you do not wish for your posts to be used as part of the study, you can contact the researcher (username- ivahdam18) by using the ‘private message’ feature of the forum and inform them of your decision to opt out. Participants shall not be required to inform or contact the moderators to convey this decision to the researcher. Choosing not to participate will not involve any penalty or loss and you will not be disadvantaged in any way. However, please note, you should contact the researcher before the 23rd August, 2018.
What are the possible disadvantages and risks of taking part?
There are no disadvantages or risks associated with taking part in this study. The privacy and confidentiality of the forum and its users shall be maintained as they will be anonymised and any identifying features will be removed.
What are the possible benefits of taking part?
The study will contribute to knowledge of how people manage their eczema and help make recommendations for improving the management of Atopic eczema in adults.
What will happen when the research study stops?
All the data, which has been anonymised, will be kept for ten years in accordance with City, University of London policy, after which it will be destroyed.
Will my taking part in the study be kept confidential?
The content shall be paraphrased if any publications arise from the research, to ensure confidentiality as well as to mitigate any conflicts relating to intellectual property rights. Direct quotes from the forum will only be used in the write-up of the Master’s dissertation. Participants can also choose to opt-out from the use of their direct quotes in the dissertation by sending a private message to the researcher (username- ivahdam18) from the forum. In all cases it will be ensured that the identity/pseudo identity/ usernames of the included user discussions and the forum shall be anonymised to maintain confidentiality. The name of the forum shall only be known to the Ethics Committee of City, University of London, the researcher and her supervisors before being anonymised. No other person will have access to the content (before and after anonymising) from the forum.
What will happen to results of the research study?
The findings will be written up into a dissertation as part of the researcher’s Masters in Health Psychology. The findings may also be presented at conferences and published in academic journals. Any quotes used in academic publications will be anonymised and the words paraphrased, to preserve confidentiality and ensure the forum and its users are not identified. A general summary of the findings of the study will be posted onto the forum
Data Protection Privacy Notice: What are my rights under the data protection legislation?
City, University of London is the data controller for the personal data collected for this research project. Your personal data will be processed for the purposes outlined in this notice. The legal basis for processing your personal data will be that this research is a task in the public interest, that is City, University of London considers the lawful basis for processing personal data to fall under Article 6(1)(e) of GDPR (public task) as the processing of research participant data is necessary for learning and teaching purposes and all research with human participants by staff and students has to be scrutinised and approved by one of City’s Research Ethics Committees.
Any identifiable information on the forum that is analysed related to self-management of eczema will be treated as special category personal data. City considers the processing of special category personal data will fall under Article 9(2)(j) of the GDPR as the processing of special category data has to be for the public interest in order to receive research ethics approval and the research has been assessed by City as being proportionate to the aim pursued and protects the rights of data subjects
The rights you have under the data protection legislation are listed below, but not all of the rights will apply to the personal data collected in each research project.
• right to be informed
• right of access
• right to rectification
• right to erasure
• right to restrict processing
• right to object to data processing
• right to data portability
• right to object
• rights in relation to automated decision making and profiling
For more information, please visit http://www.city.ac.uk/about/city-information/legal
What if I have concerns about how my personal data will be used after I have participated in the research?
In the first instance you should raise any concerns with the research team, but if you are dissatisfied with the response, you may contact the Information Compliance Team at dataprotection@city.ac.uk or phone 0207 040 4000, who will liaise with City’s Data Protection Officer Dr William Jordan to answer your query.
If you are dissatisfied with City’s response you may also complain to the Information Commissioner’s Office at http://www.ico.org.uk
What if there is a problem?
If you have any problems, concerns or questions about this study, you should ask to speak to the researcher (contact details below). If you remain unhappy and wish to complain formally, you can do this through City’s complaints procedure. To complain about the study, you need to phone 020 7040 3040. You can then ask to speak to the Secretary to Senate Research Ethics Committee and give them the name of the project. You could also write to the Secretary at: Anna Ramberg, Research Governance & Integrity Manager
Email: Anna.Ramberg.1@city.ac.uk
City holds insurance policies which apply to this study. If you feel you have been harmed or injured by taking part in this study you may be eligible to claim compensation. This does not affect your legal rights to seek compensation. If you are harmed due to someone’s negligence, then you may have grounds for legal action.
Who has reviewed the study?
This study has been approved by City University London School of Health Sciences Research Ethics Committee.
Further information and contact details
If you would like any further information about the study/would like to opt out of having your contributions on the Talkeczema forum used as part of the study, please contact: Madhavi Camotim Daconcar, School of Health Sciences, 1 Myddelton Street, City University London EC1V 0HB. Email: Madhavi.Camotim-Daconcar@city.ac.uk
Dr Jessie Cooper, School of Health Sciences, 1 Myddelton Street, City University London EC1V 0HB. Email: Jessie.cooper@city.ac.uk; Telephone: 0207 040 0882
Thank you for taking the time to read this information sheet.
This is to inform you all that there is a short study that will be conducted on the 'general discussions' of eczema in this forum. I will be very grateful if you become a part of this study.
However, it is totally alright if you do not want to participate and you can notify me about it.
Here is the information sheet of the study- it contains every thing that you may what to know about this study. Please take some time to go through.
And here I am, always, to answer any queries or clear any doubts regarding it. So please do not hesitate to contact me.
Many thanks to you all!
************************************************************************************************************************
Information Sheet for the Participants of the forum
Title of study: Understanding the Self-management of Atopic Eczema through Online Health forums: A qualitative study
We would like to let you know that a research study is taking place on Talkeczema. The information below will help you to understand the nature of this study and what you can do if you do not want your forum posts to be included in the research. Please take time to read the following information carefully. Ask us if there is anything that is not clear or if you would like more information.
What is the purpose of the study?
We wish to understand how adults seek help for and discuss the management of their eczema through online internet forums. We are doing this study because there is little understanding of how people manage eczema in their everyday lives, and discussions on internet forums will provide vital insight into these processes. Talkeczema has agreed to allow the researcher to analyse the content of its forum discussions which relate to the self-management of adult eczema.
What will happen in the study?
The researcher will register with the forum. She will then search for and download content from the discussions relating to the self-management of adult eczema which was posted between January 1st 2016 till June 30th 2018 under the ‘general discussions’ section. Any content which involves queries by carers, participants under the age of 18 years, or pertaining to childhood eczema will not be included in our study. The downloaded content will then be anonymised (e.g. changing or obscuring the names of users).The researcher shall not interact with the forum participants in any manner. The content of the forum will be accessed online by the researcher and will be collected as posted by the users.
What should I do if I wish to opt out?
The moderators of Talkeczema have agreed to the forum being used in the study, however participants on the forum can opt out of the study if they do not want their posts to be used for the study. If you do not wish for your posts to be used as part of the study, you can contact the researcher (username- ivahdam18) by using the ‘private message’ feature of the forum and inform them of your decision to opt out. Participants shall not be required to inform or contact the moderators to convey this decision to the researcher. Choosing not to participate will not involve any penalty or loss and you will not be disadvantaged in any way. However, please note, you should contact the researcher before the 23rd August, 2018.
What are the possible disadvantages and risks of taking part?
There are no disadvantages or risks associated with taking part in this study. The privacy and confidentiality of the forum and its users shall be maintained as they will be anonymised and any identifying features will be removed.
What are the possible benefits of taking part?
The study will contribute to knowledge of how people manage their eczema and help make recommendations for improving the management of Atopic eczema in adults.
What will happen when the research study stops?
All the data, which has been anonymised, will be kept for ten years in accordance with City, University of London policy, after which it will be destroyed.
Will my taking part in the study be kept confidential?
The content shall be paraphrased if any publications arise from the research, to ensure confidentiality as well as to mitigate any conflicts relating to intellectual property rights. Direct quotes from the forum will only be used in the write-up of the Master’s dissertation. Participants can also choose to opt-out from the use of their direct quotes in the dissertation by sending a private message to the researcher (username- ivahdam18) from the forum. In all cases it will be ensured that the identity/pseudo identity/ usernames of the included user discussions and the forum shall be anonymised to maintain confidentiality. The name of the forum shall only be known to the Ethics Committee of City, University of London, the researcher and her supervisors before being anonymised. No other person will have access to the content (before and after anonymising) from the forum.
What will happen to results of the research study?
The findings will be written up into a dissertation as part of the researcher’s Masters in Health Psychology. The findings may also be presented at conferences and published in academic journals. Any quotes used in academic publications will be anonymised and the words paraphrased, to preserve confidentiality and ensure the forum and its users are not identified. A general summary of the findings of the study will be posted onto the forum
Data Protection Privacy Notice: What are my rights under the data protection legislation?
City, University of London is the data controller for the personal data collected for this research project. Your personal data will be processed for the purposes outlined in this notice. The legal basis for processing your personal data will be that this research is a task in the public interest, that is City, University of London considers the lawful basis for processing personal data to fall under Article 6(1)(e) of GDPR (public task) as the processing of research participant data is necessary for learning and teaching purposes and all research with human participants by staff and students has to be scrutinised and approved by one of City’s Research Ethics Committees.
Any identifiable information on the forum that is analysed related to self-management of eczema will be treated as special category personal data. City considers the processing of special category personal data will fall under Article 9(2)(j) of the GDPR as the processing of special category data has to be for the public interest in order to receive research ethics approval and the research has been assessed by City as being proportionate to the aim pursued and protects the rights of data subjects
The rights you have under the data protection legislation are listed below, but not all of the rights will apply to the personal data collected in each research project.
• right to be informed
• right of access
• right to rectification
• right to erasure
• right to restrict processing
• right to object to data processing
• right to data portability
• right to object
• rights in relation to automated decision making and profiling
For more information, please visit http://www.city.ac.uk/about/city-information/legal
What if I have concerns about how my personal data will be used after I have participated in the research?
In the first instance you should raise any concerns with the research team, but if you are dissatisfied with the response, you may contact the Information Compliance Team at dataprotection@city.ac.uk or phone 0207 040 4000, who will liaise with City’s Data Protection Officer Dr William Jordan to answer your query.
If you are dissatisfied with City’s response you may also complain to the Information Commissioner’s Office at http://www.ico.org.uk
What if there is a problem?
If you have any problems, concerns or questions about this study, you should ask to speak to the researcher (contact details below). If you remain unhappy and wish to complain formally, you can do this through City’s complaints procedure. To complain about the study, you need to phone 020 7040 3040. You can then ask to speak to the Secretary to Senate Research Ethics Committee and give them the name of the project. You could also write to the Secretary at: Anna Ramberg, Research Governance & Integrity Manager
Email: Anna.Ramberg.1@city.ac.uk
City holds insurance policies which apply to this study. If you feel you have been harmed or injured by taking part in this study you may be eligible to claim compensation. This does not affect your legal rights to seek compensation. If you are harmed due to someone’s negligence, then you may have grounds for legal action.
Who has reviewed the study?
This study has been approved by City University London School of Health Sciences Research Ethics Committee.
Further information and contact details
If you would like any further information about the study/would like to opt out of having your contributions on the Talkeczema forum used as part of the study, please contact: Madhavi Camotim Daconcar, School of Health Sciences, 1 Myddelton Street, City University London EC1V 0HB. Email: Madhavi.Camotim-Daconcar@city.ac.uk
Dr Jessie Cooper, School of Health Sciences, 1 Myddelton Street, City University London EC1V 0HB. Email: Jessie.cooper@city.ac.uk; Telephone: 0207 040 0882
Thank you for taking the time to read this information sheet.
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