Dear Addy: Informed Consent

Dear Addy,
The last time I took my son to his HTC I was asked to participate in a survey. I didn’t have time to read the consent form because my son wasn’t feeling well that day, so I asked if I could complete the survey at the next visit. The nurse told me I would be providing the same information from the previous year and encouraged me to quickly sign the form.  I just didn’t feel comfortable signing a form without reading everything on it. The nurse also seemed annoyed that I wanted to speak with the hematologist to ask some additional questions before signing the form. The nurse made me feel uncomfortable, so I decided not to participate in the survey. Did I go too far?
~No Consent
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Dear No Consent,
You did great. You were right to ask to speak to your hematologist because you had concerns about the survey. As a patient, you have a right to know all the details about a survey or research study before you agree to participate. It is your or your child’s data that you will be providing. Anyone offering you an opportunity to participate in a survey or study should be willing to disclose all details about the survey or research study to you. Transparency in such instances is the norm. You should feel comfortable asking the person administering the survey questions about the survey. When you are considering participating in a survey or research study, do the following before you provide your or your family’s personal information:

Informed Consent/Shared Decision-Making Checklist for Surveys and Research Studies

1. Have the purpose of the survey or research study explained to you.
2. Make sure you have enough time to read and understand the consent form before signing.
3. Know in advance how long it will take to complete the survey or research study.
4. Have all the steps needed to complete the survey or research study explained to you.
5. Ask for the name and contact information of someone to contact if you have additional questions and/or if you wanted to receive additional information about the survey or research study.
6. Have the potential risks associated with the survey or research study explained to you.
7. Have the potential benefits associated with the survey or research study explained to you.
8. Check for a statement in the consent form that explains how the data will be used, if the data will remain confidential, and that reasonable efforts will be taken to keep your identity private.
9. Check for a statement in the consent form that explains how participating the survey or research study is voluntary and that refusal to participate does result in a penalty.

Sincerely,
Addy
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HFA frequently receives questions from the bleeding disorders community related to advocacy issues. The questions often impact the entire community. In an effort to reach the largest audience possible with our responses to these widely applicable questions, HFA developed “Dear Addy.” Questions submitted to this column are edited in order to protect privacy and should be considered educational only, not individual guidance.