Consent and Background

THE DYSUNDERSTOOD PODCAST RESEARCH STUDY

DESCRIPTION: You are invited to participate in a research study evaluating the impact of the Dysunderstood Podcast on understanding and attitudes toward post-viral illnesses and the related patient population. We hope to learn whether this form of media is an effective tool for learning about post-viral and chronic illnesses, in addition to its effectiveness in changing perception and opinions of post-viral illnesses. You were selected as a possible participant in this study because you are a member of a community that is broadly affected by post-viral illness. You will be asked to complete the initial participant survey, listen to 2 episodes of the first season of the Dysunderstood Podcast, and lastly, complete the final participant survey.

REQUIREMENTS: In order to participate, you must be 18 years or older, be willing and able to listen to (or read transcripts of) podcast media, and understand/speak English.

TIME INVOLVEMENT: Your participation will take approximately 3 hours.

RISKS AND BENEFITS: The risks associated with this study are minimal. You may experience mild discomfort when discussing personal experiences or opinions related to post-viral illnesses. You are not required to share any information that you do not feel comfortable disclosing. This study may involve risks to the subject which are currently unforeseeable. By participating in this study, you will contribute to our understanding of the impact of the Dysunderstood Podcast on increasing awareness and knowledge about post-viral illnesses. This information may help improve educational tools and methods for medical students, healthcare professionals, and the general public, ultimately leading to better support and care for individuals affected by these conditions. You may obtain personal, emotional benefit from listening to the Dysunderstood Podcast. We cannot and do not guarantee or promise that you will receive any benefits from this study. Your decision whether or not to participate in this study will not affect your medical care, employment, or grades in school.

PAYMENTS: You will not receive payment for your participation.

SPONSOR: Stanford University School of Medicine is providing financial support and/or material for this study.

PARTICIPANT'S RIGHTS: If you have read this form and have decided to participate in this project, please understand your participation is voluntary and you have the right to withdraw your consent or discontinue participation at any time without penalty or loss of benefits to which you are otherwise entitled. The alternative is not to participate. You have the right to refuse to answer particular questions. The results of this research study may be presented at scientific or professional meetings or published in scientific journals. Your individual privacy will be maintained in all published and written data resulting from the study.

Identifiers might be removed from identifiable private information and, after such removal, the information could be used for future research studies or distributed to another investigator for future research studies without additional informed consent from you.


WITHDRAWAL FROM STUDY

If you first agree to participate and then you change your mind, you are free to withdraw your consent and discontinue your participation at any time.

If you decide to withdraw your consent to participate in this study, you should notify Ella Eastin at (714)788-3596.

The Protocol Director may also withdraw you from the study without your consent for one or more of the following reasons: (Note to investigator: check your protocol; you may use these reasons and/or add some of your own).
• Failure to follow the instructions of the Protocol Director and study staff.
• The Protocol Director decides that continuing your participation could be harmful to you.
• The study is cancelled.
• Other administrative reasons.
• Unanticipated circumstances.

*Authorization To Use Your Health Information For Research Purposes
Because information about you and your health is personal and private, it generally cannot be used in this research study without your authorization. If you agree to this form, it will provide that authorization. The form is intended to inform you about how your health information will be used or disclosed in the study. Your information will only be used in accordance with this authorization form and the informed consent form and as required or allowed by law. Please read it carefully before agreeing to it.

What is the purpose of this research study and how will my health information be utilized in the study?
This research study is being conducted to evaluate the impact of the Dysunderstood Podcast on understanding and attitudes toward post-viral illnesses and the related patient population. We hope to learn whether this form of media is an effective tool for learning about post-viral and chronic illnesses, in addition to its effectiveness in changing perception and opinions of post-viral illnesses. Your health information will be collected in order for us to determine changes in perspective and understanding of these illnesses based on your affiliation (whether you are a patient, student, medical provider, or broader community member). We will collect the minimum amount of health information possible to achieve this goal.

Do I have to agree to this authorization form?
You do not have to agree to this authorization form. But if you do not, you will not be able to participate in this research study.
Agreeing to the form is not a condition for receiving any medical care outside the study.

If I agree, can I revoke it or withdraw from the research later?
If you decide to participate, you are free to withdraw your authorization regarding the use and disclosure of your health information (and to discontinue any other participation in the study) at any time. After any revocation, your health information will no longer be used or disclosed in the study, except to the extent that the law allows us to continue using your information (e.g., necessary to maintain integrity of research). If you wish to revoke your authorization for the research use or disclosure of your health information in this study, you must write to: Ella Eastin (eeastin@stanford.edu).

What Personal Information Will Be Obtained, Used or Disclosed?
Your health information related to this study, may be used or disclosed in connection with this research study, including, but not limited to, Names, telephone numbers, emails, demographic information, medical diagnoses, medical treatments, and medical encounters.

Who May Use or Disclose the Information?
The following parties are authorized to use and/or disclose your health information in connection with this research study:
• The Protocol Director (Ella Eastin)
• The Stanford University Administrative Panel on Human Subjects in Medical Research and any other unit of Stanford University as necessary
• Research Staff

Who May Receive or Use the Information?
The parties listed in the preceding paragraph may disclose your health information to the following persons and organizations for their use in connection with this research study:

• The Office for Human Research Protections in the U.S. Department of Health and Human Services
Your information may be re-disclosed by the recipients described above, if they are not required by law to protect the privacy of the information.

When will my authorization expire?
Your authorization for the use and/or disclosure of your health information will end on December 31, 2050 or when the research project ends, whichever is earlier.

CONTACT INFORMATION:
Questions: If you have any questions, concerns or complaints about this research, its procedures, risks and benefits, contact the Protocol Director, Ella Eastin at (714)788-3596. You should also contact them at any time if you feel you have been hurt by being a part of this study.

Independent Contact: If you are not satisfied with how this study is being conducted, or if you have any concerns, complaints, or general questions about the research or your rights as a participant, please contact the Stanford Institutional Review Board (IRB) to speak to someone independent of the research team at 650-723-5244 or toll free at 1-866-680-2906. You can also write to the Stanford IRB, Stanford University, 1705 El Camino Real, Palo Alto, CA 94306.


Please print a copy of this page for your records.

If you agree to participate in this research, please click "I agree and consent to participate in this research." You may then begin participating in the study by clicking "continue."

You have selected an option that triggers this survey to end right now.