Psycho-Babble
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This specific protocol is considered a research study because its results may be published or presented. Consent to participate in research is therefore required to take part.
Protocol number: 13459A
Study title: User feedback to inform health care providers about online peer support groups
Doctors directing research: Robert Hsiung, MD, Associate Professor of Psychiatry, University of Chicago; Joshua Freedman, MD, Assistant Clinical Professor of Psychiatry, UCLA
E-mail address: dr-bob@uchicago.edu
You are being asked to participate in a research study. Robert Hsiung, MD, aka Dr. Bob, is available to explain what is involved in this study and how it will affect you. This consent form describes the study procedures, the risks and benefits of participation, and how your confidentiality will be maintained. Please take your time to ask questions and feel comfortable making a decision whether to participate or not. This process is called informed consent. If you decide to participate in this study, you will be asked to take a quiz on this information.
Why is this study being done?
The purpose of this study is to collect feedback from users of Psycho-Babble and to use that feedback to inform health care providers about online peer support groups. This research is being done because some health care providers have limited understanding of the advantages and disadvantages of a group like Psycho-Babble. User feedback provides a unique and valuable perspective.
How many people will take part in the study?
Approximately 50 participants are anticipated. People throughout the world may participate.
Am I eligible for the study?
Participation is limited to registered Psycho-Babble members who are not blocked from posting. In addition, those who are younger than 18 or pregnant will be considered vulnerable and therefore ineligible.
What is involved in the study?
This study will be active for 2 weeks. The "experimental procedure" is submitting feedback. You will be able to submit feedback for this study by posting it to one particular thread at Psycho-Babble Administration. Your feedback will be visible on Psycho-Babble and will include your posting name.
During this study, Dr. Bob will collect your feedback for the purposes of this research. User feedback provides a unique and valuable perspective. It is hoped that news articles and presentations at professional meetings will be able to be based on it. Your feedback will not necessarily be included. If included, it may or may not be quoted verbatim.
After the 2 weeks that the study is active, posting to that thread will be open, but posts to it will not be considered for this study.
How long will I be in the study?
This study will be active for 2 weeks.
Dr. Bob may decide to block you from posting and thereby take you off of the study without your consent if you do not follow the posting guidelines in the Frequently Asked Questions.
What are the risks of the study?
Unsupportive responses by other users. This is considered less likely.
Loss of confidentiality if you choose to post identifying information. This is considered less likely, but potentially serious and irreversible.
Are there any benefits to taking part in the study?
If you agree to take part in this study, there may be direct benefit to you. You may feel good about contributing to the education of health care providers, and Psycho-Babble itself may be improved. We hope the information learned from this study will benefit other individuals who use online peer support groups in the future. No results, however, are guaranteed.
What other options are there?
Instead of being in this study, you have these options: posting feedback independently of this study, e-mailing feedback to Dr. Bob, and not expressing feedback.
What are the costs?
There is no cost to participate in this study.
Will I be paid for my participation?
You will not be paid for participating.
What about confidentiality?
Like other posts here, feedback you submit for this study will automatically include your posting name and be public.
If you choose to post identifying information, others may link you in "real" life to information you previously posted. If you ask Dr. Bob, he will delete identifying information that you post, but others may see it before he can do that.
The e-mail address that you registered with and the IP addresses that you connect from will be kept confidential. That data is stored on the Web server. It has a security-hardened operating system and hacking alerts. It is in a modern data center and is monitored "24/7." Besides the technical support staff, only Dr. Bob is authorized to access it.
The data collected in this study will be used for the purpose described above. The research team will not have access to your medical records.
Your research record may be reviewed by representatives of federal agencies, including the Office of Human Research Protections (OHRP), whose responsibility is to protect human subjects in research. In addition, representatives of the University of Chicago, including the Institutional Review Board, a committee that oversees the research at the University of Chicago, may also view the records of the research.
Any feedback you submit for this study will be kept on the Web server and may be used by the research team indefinitely.
Data from this study may be used in medical publications or presentations. Your name and other identifying information will be removed before this data is used unless you request otherwise. If we wish to use identifying information in publications, we will ask for your approval at that time.
What are my rights as a participant?
Taking part in this study is voluntary.
You may choose not to participate at any time during the study. Dr. Bob may still use any feedback that was collected prior to that decision.
You are welcome to print out this document for future reference.
Whom do I call if I have questions or problems?
You have obtained information from Dr. Bob about this study and you have had the opportunity to ask questions concerning any and all aspects of the research. If you have further questions about the study, you may e-mail him at the e-mail address at the beginning of this form.
If you have any questions concerning your rights in this research study, you may contact the Institutional Review Board, which is concerned with the protection of subjects in research projects. You may reach the IRB office between 8:30 am and 5:00 pm, Monday through Friday, by calling (773) 702-6505 or by writing Institutional Review Board, University of Chicago, 5841 S. Maryland Avenue, MC 1108, Chicago, Illinois 60637.
Again, if you have any questions about this, please e-mail Dr. Bob at dr-bob@uchicago.edu.
If you understand the potential risks and benefits of this study and still want to participate, please:
If you do not want to participate in this study, then:
return to the Psycho-Babble home page
Thank you.
Dr. Bob is Robert Hsiung, MD, dr-bob@uchicago.edu
Revised: October 21, 2004
URL: http://www.dr-bob.org/babble/consent-feedback.html