RESEARCH PARTICIPANT CONSENT FORM
Understanding and Learning from Patient Testimonials in Online Communities
Rua M. Williams
Computer Graphics Technology
Purdue University
Key Information Please take time to review this information carefully. This is a research study. Your participation in this study is voluntary which means that you may choose not to participate at any time without penalty or loss of benefits to which you are otherwise entitled. You may ask questions to the researchers about the study whenever you would like. If you decide to take part in the study, you will be asked to confirm at the end of this page, be sure you understand what you will do and any possible risks or benefits.
We are studying what conflicts between patients and physicians can tell us about healthcare inequity. We are conducting this study because patients and physicians need new strategies for working together against healthcare inequity. This survey will take approximately 10 to 30 minutes of your time. At the end of this survey, you may volunteer for an additional hour interview to be scheduled at a later date.
What is the purpose of this study?
The purpose of this study is to better understand the issues faced by patients and physicians that lead to conflicts and inadequate care. You are being asked to participate in this study because you have indicated that you remember the #DoctorsAreDickheads hashtag on social media. This moment and the conversations surrounding it may lead to better understanding of the issues in medical care. We would like to enroll 500 people in this study.
What will I do if I choose to be in this study? If you choose to be in this study, you will answer a series of questions via this Qualtrics survey. These questions will invite you to discuss your experiences with the #DoctorsAreDickheads hashtag on social media. You will also be asked to share links to any articles or conversations you remember about this topic. These questions should take you between 10 and 30 minutes to complete. At the end of this survey, you may volunteer to be contacted for an additional hour-long interview, to be scheduled at a later date. Your data will be stored on a secure file server, and your email address will be separated from your data to protect your anonymity. Your email, if volunteered, will only be used to contact you for interview scheduling. No video, audio, or transcript data of interviews will be saved. After we have conducted 20 interviews, the email list will be deleted.
How long will I be in the study? The survey will take between 10 and 30 minutes, on average. If you volunteer for and are selected for a video interview, that interview will be no longer than one hour. That hour will be scheduled at your convenience.
What are the possible risks or discomforts? The study involves no more than minimal risk associated with any private conversation about experiences with giving or receiving medical care. Some participants may find describing their past poor experiences with medical care distressing. You are able to discontinue participation at will. You have been recruited on the basis of your willingness to share these experiences.
The risks associated with participation are no greater than your initial participation in public online discussions on this topic and are no greater than you would encounter in daily life or during the performance of routine physical or psychological exams or tests.
Breach of confidentiality is always a risk with data, but we will take precautions to minimize this risk as described in the confidentiality section.
Are there any potential benefits? There are no direct benefits of participation in this research. Some participants may feel a sense of relief from sharing their experiences. Better understanding patient-physician interactions may help us identify systemic dysfunctions in care that impact both patient experience and physician working conditions.
This section provides more information about the study
Will information about me and my participation be kept confidential?
The project's research records may be reviewed by the US DHHS Office for Human Research Protections, and by departments at Purdue University responsible for regulatory and research oversight. Only research staff will have access to original survey data. Any volunteered email addresses will be separated from the original survey data. A record of volunteered email addresses will be destroyed after interviews have been completed. No video, audio, or transcript data of the interviews will be kept. Researchers will take anonymized field notes only. These notes and survey data will be stored on secure Purdue Box account. Anonymized and aggregated results will be disseminated in research articles and presentations.
What are my rights if I take part in this study? You do not have to participate in this research project. If you agree to participate, you may withdraw your participation at any time without penalty. Participants may withdraw by exiting the survey or leaving the interview. As participant data is anonymized, it may not be possible to withdraw data after it is given.
Who can I contact if I have questions about the study?
If you have questions, comments or concerns about this research project, you can talk to one of the researchers. Please contact Rua M. Williams at rmwilliams@purdue.edu.
To report anonymously via Purdue’s Hotline see www.purdue.edu/hotline
If you have questions about your rights while taking part in the study or have concerns about the treatment of research participants, please call the Human Research Protection Program at (765) 494-5942, email (irb@purdue.edu) or write to:
Human Research Protection Program - Purdue University
Ernest C. Young Hall, Room 1032
155 S. Grant St.
West Lafayette, IN 47907-2114
Documentation of Informed Consent
I have had the opportunity to read this consent form and have the research study explained. I have had the opportunity to ask questions about the research study, and my questions have been answered. I am prepared to participate in the research study described above. I am able to save a copy of this form to my local device. By clicking on the submit button below, I indicate my consent and begin participation.