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Evaluation Of PIES
PIES - A study about Personalised
Information, Education and Support
for cancer patients and carers
You are being invited to take part in an evaluation study. Before
you decide, it is important for you to understand why the study
is being done and what it will involve. Please take time to read
the following information carefully, and discuss it with others
if you wish. 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 wish to take part. Thank you for reading this.
What is the purpose of this study?
Like you, we think that information is very important, particularly
when you or someone close to you is ill. Because we are all different,
we have different needs regarding what information we need, when
we want it and how to get it.
In the past, most of the information from professionals to patients
and carers has been given via leaflets, booklets, and of course
in consultations between health care professionals and patients
and carers. These are excellent methods that we want to keep using.
The internet has recently become another source of information
for people, also in relation to finding health information. A
positive thing about the internet is that it can provide access
to a wealth of information in any possible area. This can however
also be a downside, as it can be hard to find exactly what we
are looking for and to decide if the information we find is reliable.
In this study, we wish to find out more about how people use the
internet for information relating to a cancer illness. In particular,
we wish to ask about people's views on a new website called PIES,
that we are developing with the intention of assisting people
in finding reliable and useful information on the internet.
Why have I been chosen?
Everyone who has used the PIES website at least once in order
to look for information relating to a cancer illness is invited
to fill in this questionnaire.
Do I have to take part in the study?
No, you are in no way obliged to take part in the study. It is
completely voluntary, and even if you do choose to participate,
you are not obliged to answer all the questions in the questionnaire.
If you choose not to take part, your care and follow-up will not
be compromised in any way.
What is involved if I decide to take
part?
We invite you to fill in a questionnaire where we ask several
questions related to online information. We will specifically
ask for your opinion about use of the PIES website in relation
to finding relevant information for you. We have also added some
questions, which will give us some background about you. You might
wonder how these questions can have anything to do with issues
of information. We ask these questions because we are interested
in what we call 'personalised information' that relates to your
needs. In order to find out more about that, we need to know something
about you as a person and the type of information you are looking
for. This background data will also help us check that we have
collected feedback from a variety of different users in the study.
You will only need to fill in one questionnaire. It should not
take more than 10 - 15 minutes to complete it.
What if I wish to complain about the
way in which the study has been conducted?
If you wish to complain, or have any concerns about any aspect
of the way you have been approached or treated during the course
of this study, the normal National Health Service complaints mechanisms
are available to you.
Will the information I give be confidential?
Yes, the questionnaire is anonymous and strictly confidential.
We will not ask for your name, and you will not be identified
in any way by filling in the questionnaire. We will not be making
any attempt to trace the location of the computer you have used
for filling in the questionnaire.
What will happen to the results of
the study?
The results of this evaluation will be published in various ways
by our department after the study has ended. Information about
the progress of such publications can be found on our department's
website (http://www.sheffield-palliative.org.uk
) or can be obtained by contacting the Project Manager.
Who is organising and funding the study?
The study is carried out by a team based at the University of
Sheffield, UK - within the Academic Palliative Medicine Unit in
collaboration with School of Nursing and Midwifery. It is funded
by Macmillan Cancer Relief.
Contact persons are:
Dr Richard Stevens
Research Associate
Email: r.j.stevens@sheffield.ac.uk
Hilde Hjelmeland Ahmedzai
PIES Project Manager
Email: h.h.ahmedzai@sheffield.ac.uk
Address and telephone for both above:
University of Sheffield
Trent Palliative Care Centre
Sykes House, Little Common Lane
Sheffield S11 9NE
Telephone: (0114) 262 0174
Professor Sam H Ahmedzai
Lead Investigator for PIES Academic Palliative Medicine Unit
University of Sheffield
Surgical and Anaesthetic Sciences
Royal Hallamshire Hospital, K Floor
Sheffield S10 2JF
Telephone: (0114) 271 2950
Email: pallmed@sheffield.ac.uk
12 August 2002 (online version 1)
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