Sometimes it is beneficial to include research participants in efforts to communicate your study with the public. This section shares guidance and policies about how to include study participants in communication efforts.
Because members of the public feel more connection to people who resemble them, it can be very effective to feature actual research participants in communication. For study teams, this can involve approaching them to share their story in U-M-generated communication vehicles such as news releases, websites, ads, brochures, or social media posts or videos; you may also consider approaching them about interest from a reporter.
All participants who share their stories in this way must sign the Michigan Medicine HIPAA-compliant consent form available here.
Individuals who are currently considering taking part in a research study, but are not yet enrolled, should not be approached about potential participation in any communication efforts about that study.
Research participants who are currently in the treatment phase of a clinical study may not be approached about communication activities until and unless the IRBMED has worked with you to ensure that the participant understands that they are under no obligation to participate in publicity activities.
During the treatment phase, only filming and photography needed for research purposes is allowed. After photos or video are acquired, they may be included in communication materials that will be reviewed by the IRBMED, but only if participant consent for this use is secured.
After the treatment phase of the study has been completed, or in the case of studies that do not involve a treatment phase, research participants may be made available to the media – if they are willing to sign a Michigan Medicine HIPAA-compliant consent form and this form is filed with the research team and the individual’s U-M electronic health record (if any).
In some cases, reporters may wish to speak to a study participant about his or her experience. Participants will not be asked or expected to answer technical questions about the research, but rather will be asked to speak to their experience on the study – their personal motivation to participate, their relevant health information, what they personally did as part of the study, and any side effects, inconvenience or benefit they personally received. This information is generally presented as one person’s experience and is put in the greater context of overall study findings.
You will be asked to assist the media relations representative in identifying a patient/study participant who may be willing to speak to media. This may include making initial contact with the volunteer to determine interest. You may share patient information with a U-M media relations representative, who is protected under HIPAA. You may NOT share patient information with a media relations representative from outside U-M, nor with a reporter, without the U-M media relations person’s assistance in obtaining patient consent. The U-M media relations representative will contact the patient to provide more details and to ensure patient signs a HIPAA release form.
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