Participant Information Leaflet
Study Title:
Which factors impact behavioral intentions of people affected by
cancer on health websites?
Investigator(s):
Suncica Hadzidedic Baždarević (PhD research student) and Dr
Alexandra I. Cristea (Associate Professor (Reader))
BSREC Reference: REGO-2016-1750
Introduction
If you would like to inform yourself about the ethical considerations, your rights in this study,
and its objective, continue reading the Participant Information. Otherwise, scroll to the end of
this section and agree to the last four points before clicking the Next (i.e., Continue) button.
You are invited to take part in a research study. Before you decide, you need to understand
why the research is being done and what it would involve for you. Please take the time to
read the following information carefully. Talk to others about the study if you wish.
Part 1 tells you the purpose of the study and what will happen to you if you take part. Part 2
gives you more detailed information about the conduct of the study.
Please ask us if there is anything that is not clear or if you would like more information. Take
time to decide whether or not you would like to take part.
PART 1
What is the study about?
It has been identified that people affected by cancer in Bosnia-Herzegovina lack adequate
health information and support, both offline and, more importantly for the purpose of this
study, online. The study will explore the factors that impact intentions to reuse health
websites of people affected by cancer, including their satisfaction with the website,
perception about the website’s usability, preferences for personalization and privacy
services, as well as emotional state in the process of website usage. The objective of this
endeavor is to provide people affected by cancer, directly or indirectly, in BosniaHerzegovina and worldwide, a usable and useful health website, through which they will
more easily access more relevant information and support.
Do I have to take part?
It is entirely up to you to decide. We will describe the study and go through this information
sheet, which we will give you to keep.
The study contains a questionnaire. If you choose to participate in the questionnaire, by
returning a completed questionnaire, you are giving your consent for the information that you
have supplied to be used anonymously in this study.
You will be free to withdraw at any time, without giving a reason and this will not affect you or
your circumstances in any way. However, your participation would very much be appreciated
and would be of great contribution to the study.
What will happen to me if I take part?
If you choose to participate in the survey, you will take part in an experiment and fill out a
survey questionnaire, which should take no longer than 90 minutes.
As part of the experiment and the questionnaire you will be instructed to perform the
following:
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You will be instructed to visit three versions of the Association PORT’s health website
(a non-governmental organization helping cancer patients in Bosnia and
Herzegovina).
For each of the website versions you will be provided a link to the website.
You will then be asked to use the website versions taking the role of a person
affected by cancer.
As part of the usage process, you should create an account (register your details)
and log into the website to have access to the full-set of its services.
A part of the website usage process can include creating and posting content on the
website, as well as providing personal details on your profile.
 Particularly, you will be asked to report on your emotional state – stating the
intensity of emotions you are experiencing from a set of predefined emotions,
the level of valence, arousal and dominance, using the website’s emotion tool
– a feature for measuring user emotional state.
 Please note that any user-created content on the website’s blogs and forums,
as well as article comments, will be publicly available, visible to all website
users and visitors. Therefore, take time to read PORT’s privacy policy to
inform yourself about the privacy of personal information on the website.
 Also be aware that we are tracking users' activities on the website - links
clicked, content rated, features used, etc. This data will be used in aggregated
form, it will be anonymized, and will not be connected to a specific
user/username.
 You can change or remove the content you publish on the website. You can
also request deleting your account and all the related content entirely, by
emailing the website administrator to kontakt@port.org.ba.
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After using each version of the website, you will be presented with a set of questions
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to evaluate the corresponding website version, in terms of its usability, satisfaction
with the website and intentions to reuse that website version. The questionnaire will
also collect your perception about the usefulness of personalization features
available on the website, and the emotions you experienced after using the website.
Submitting the online questionnaire will mark the end of your participation in the
study.
The survey questionnaire is divided into several sections: demographic data, website
usability, personalization, privacy, emotions, and usage intentions.
What are the possible disadvantages, side effects, risks, and/or discomforts of taking
part in this study?
Your data will be anonymized and stored encrypted with the research. You should not
experience any consequences, risks or discomfort as a result of taking part in this study.
What are the possible benefits of taking part in this study?
By participating in this study you will be contributing to our understanding of the factors that
impact online personalization services and address privacy concerns on health websites,
specifically among people affected by cancer. Thereby you will be assisting in developing an
improved, personalized version, of the PORT health website to provide more appropriate
information and support to people affected by cancer, directly or indirectly.
The target group for the research is people affected by cancer, specifically users of the
current PORT.org.ba website and PORT’s Facebook page, but also other potential users
both from Bosnia and Herzegovina and wider, who are directly or indirectly affected by
cancer.
What will happen when the study ends?
Once the study is complete, anonymized copies of the data will be held securely (in a locked
filing cabinet, or on an encrypted file system) for 10 years (as required by the University
regulations) and then destroyed.
Will my taking part be kept confidential?
Yes. We will follow strict ethical and legal practice and all information about you will be
handled in confidence. Further details are included in Part 2.
What if there is a problem?
Any complaint about the way you have been dealt with during the study or any possible
harm that you might suffer will be addressed. Detailed information is given in Part 2.
This concludes Part 1.
If the information in Part 1 has interested you and you are considering participation,
please read the additional information in Part 2 before making any decision.
_________________________________________________________________________
PART 2
Who is organizing and funding the study?
This study is part of Suncica Hadzidedic Bazdarevic’s PhD research. Funding is through the
University of Warwick.
What will happen if I don’t want to carry on being part of the study?
Participation in this study is entirely voluntary. However, if you decided not to take part in the
study, this will not affect you in any way.
If you decide to take part in the study, you will thereby give your consent to participate in the
website evaluation/experiment part of the survey and to answer the related evaluation
questionnaire.
If you agree to participate, you may nevertheless withdraw from the study at any time, [prior
to submitting your responses (clicking the Submit button at the end of the online survey)],
without affecting you in any way. You have the right to withdraw from the study completely
and decline any further contact by study staff after you withdraw. Withdrawal from the study
will not affect your usual care or any benefits to which you are otherwise entitled.
What if there is a problem?
This study is covered by the University of Warwick’s insurance and indemnity cover. If you
have an issue, please contact the Chief Investigator of the study:
Suncica Hadzidedic Bazdarevic
PhD Researcher and Student
Department of Computer Science
University of Warwick
Coventry, UK, CV4 7AL.
E: S.Hadzidedic@warwick.ac.uk
Who should I contact if I wish to make a complaint?
Any complaint about the way you have been dealt with during the study or any possible
harm you might have suffered will be addressed. Please address your complaint to the
person below, who is a senior University of Warwick official entirely independent of this
study:
Director of Delivery Assurance
Registrar's Office
University House
University of Warwick
Coventry
CV4 8UW
Complaints@Warwick.ac.uk
024 7657 4774
Will my taking part be kept confidential?
Once the study is complete, anonymized copies of the data will be held securely (in a locked
filing cabinet, or on an encrypted filesystem) for 10 years (as required by the University
regulations) and then destroyed. During that period, access will be available only by the
researcher and the research supervisor.
What will happen to the results of the study?
The results of the study will be published in Suncica Hadzidedic Bazdarevic’s PhD thesis
report, presentations, conferences and in academic papers. You may request to receive a
copy of the findings.
Who has reviewed the study?
This study has been reviewed and given favorable opinion by the University of Warwick’s
Biomedical and Scientific Research Ethics Committee (BSREC): REGO-2016-1750 dated
February 2016.
What if I want more information about the study?
If you have any questions about any aspect of the study or your participation in it not
answered by this participant information leaflet, please contact:
Suncica Hadzidedic Bazdarevic
PhD Researcher and Student
Department of Computer Science
University of Warwick
Coventry, UK, CV4 7AL.
E: S.Hadzidedic@warwick.ac.uk
Academic supervisor:
Dr Alexandra I. Cristea
Associate Professor
T: (+44) 24 765 73774
E: A.I.Cristea@warwick.ac.uk
Thank you for taking the time to read this participant information leaflet.
Continuing to the next section of this survey by clicking on the “Continue/Next” button,
you agree to the collection of your data and responses given in the survey questionnaire,
and the following:
1.
I confirm that I have read and understood the information for the above study.
2.
I understand that my participation is voluntary and that I am free to withdraw at any time
without giving any reason, without my medical, social care, education, or legal rights being
affected.
3.
I understand that my taking part will be confidential and anonymous, and that the study’s
findings will be used by Sunčica Hadžidedić Baždarević for publishing academic papers,
presentations and in her PhD thesis.
4.
I agree to take part in the above study.