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. 2021 Jun 10;11(6):538. doi: 10.3390/jpm11060538

Table 3.

Design requirements for health system-led direct contact programs.

Theme Exemplar Quote
Patients should provide consent for a
provider to contact their relatives.
You have to obviously get permission from that patient and have that patient list every single family member and then yeah, that’s fine, but you couldn’t do it without permission. (relative)
Relatives should be able to decide which (if any) information they want to receive, and how they act on that information. I may not want to know at all. I don’t want to carry the burden of knowing that there’s a possibility that they have the gene, right? (relative)
Multiple communication channels and multiple efforts should be used to
communicate with relatives, with clear communication of the final outreach.
And here’s what—I really wouldn’t care. Somebody calls and tells me there’s a chance you may have a higher risk. Do with this what you want. That’s really what the information is at the end of the day…I don’t care if it was the medical assistant or the receptionist at the front... So I don’t think it really does matter as long as you’re getting the message out there to the most people. (relative)
Communication points with relatives: the patient has given their permission to
contact; a clear reason for contact,
information on the potential inherited risk and associated diseases. Information on cost and coverage for testing and
information on relevant privacy and
nondiscrimination laws may also be
relevant.
The counselor just leaves a message and says this is regarding a condition that runs in your family related to cancer. I have spoken with your sister Molly. She gave me permission to share this information. You know, this is why it’s important for you. This is why it’s important for your daughters. If you want more information, please feel free to call me back or you can talk to your own doctor, et cetera. (proband)
The clinician should make a clear
recommendation for genetic testing and provide clear follow-up steps.
This mutation runs in your family. Here are the risk factors. Here’s your percentage of, you know, getting this or whatever—end of story. And then you—here’s what we recommend. We recommend that you have testing, and then if you have children, your children have testing. This can occur in males and females. And then that’s it. (proband)
Patients should still receive support or written resources to share with their relatives The packet from Group Health was fantastic. It had everything there. I didn’t have to run the risk of saying something wrong. I just sent the packet [to my relative]. Everything was there including my particular BRCA mutation and everything they needed to know. (proband)