Survey on Use of Medical Equipment
(Consent Disclaimer)
Introduction
Thank you for thinking about being involved in this study. It is
being done by Rehabilitation Engineering Research Center (RERC) on Accessible
Medical Instrumentation. The study is being led by June Isaacson Kailes,
Associate Director of Western University's Center for Disability Issues and the
Health Professions, in Pomona, CA, and Dr. Jill Winters, from Marquette
University's College of Nursing in Milwaukee, WI.
Your Participation in the Survey
The reason we have asked you to complete this survey is we want to
learn more about what types of medical equipment you may have found hard
to use or you think might present problems for you to use. Later, we will make
changes to some equipment, making them easier for people with disabilities to
use.
Information learned from this study may be shared with public or
government groups, and/or shared at meetings or in magazines. The information
will be shared as opinions received from a group of people with disabilities
who completed part or all of the survey. Information will not be linked to
anyone who filled out the survey.
If you finish part or all of this survey, it means you understand
how we will use the information you give us and you agree to take part in this
study. Doing this survey is voluntary, and you can stop answering questions at
any time, without penalty. Your identity will not be shared with anyone, and
your answers will not be linked to your name in any way. This site is password
protected, so no one other than the researchers will have th access to your
information. Your name will not appear anywhere on the data we collect. About
30 people with disabilities will participate in this study.
Benefits and Risks of Participation
There are no direct personal benefits to you for filling out this
survey. It will take about 30 to 90 minutes to finish. Although we don't expect
any risks, there is a minimal chance you may get tired when completing the
survey. Therefore, if you need to take a break while filling out the survey,
simply log out. You may log in as many times as necessary to complete the
survey.
Authorization for Use and Disclosure of Protected Health Information
Completing this survey will involve your protected health
information. You will be asked to provide information about your age, current
state of health, and types of disability. This information will be stored in a
password-protected computer and will only be available to Ms. Kailes, Dr.
Winters and the research team. No information will be collected that identifies
you or connects you to the data you give us.
The health information you give us will help us find problems
that people with disabilities have with some medical devices, as well as with
this survey. Reports will be shared with public that describe the types of
people who took part in the survey, and the problems they have had with some
medical devices. Your information will be combined with everyone else's data.
No information will be shared about individual people. The information will be
kept secure until December 31, 2008, when it will be destroyed.
The private health information you provide may be reviewed by
officials, in order to meet federal or state rules. Reviewers may include
representatives from the Department of Health and Human Services, the Marquette
University Institutional Review Board, and/or the Western University
Institutional Review Board.
You have the right to withdraw your permission/authorization, in
writing, at any time. To withdraw, contact Dr. Jill Winters at the address at
the bottom of this web page, or by e-mail at
jill.winters@marquette.edu, and let her know that you are withdrawing
your permission to use your protected health information. All of the health
information you have already submitted as part of the study will continue to be
used, but no new information about you will be collected.
You may print a paper copy of these instructions for your records.
Returning this survey shows that you agree to have your personal health
information shared with the research team and used as described above.
Contact the Researchers
You may ask questions of the research staff at any time during
the study by contacting:
June Isaacson Kailes
Center for Disability Issues and the Health
Professions
Western University of Health Sciences
Pomona, CA 91766-1854
Phone: (310) 821-7080
Technical Assistance
If you have any difficulty accessing or completing the survey or
submitting the completed survey, please contact:
Jack Winters, Ph.D.
Email: TA@rerc-ami.org
Phone: (414) 288-6640
Getting Started
The purpose of this survey you are filling out is to help us learn
about difficulties that some people with disabilities have using some medical
equipment, such as devices used for diagnosing and treating medical problems.
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Thank you for helping us with this very important project!