What A Microsite Coach Can and Can’t Do for People Seeking a Living Kidney Donor
If you are a kidney patient seeking a living donor and you have joined the microsite program, which offers free personal donor search websites, you will have the option to request a donor search coach.
Donor search coaches are experts who have found themselves or a loved one a kidney through a donor search. There are eight donor search coaches, including two bilingual coaches who can help patients who speak either English or Spanish. Meet the coaches.
Donor search coaches can help answer your questions about the donor search and transplant processes, assist you with your microsite, help you navigate the many programs available to kidney patients and donors, and work with you to develop strategies for finding a living donor.
However, there are specific guidelines regarding what a donor search coach can do. To avoid confusion, here’s a detailed list of how coaches can help microsite patients in their search for a living kidney donor, and what they are not able to do.
Coaches can help you write your microsite story, in either Spanish or English. Donor search coaches can walk you through the process of telling your story, ask you questions, help you write, and even translate from Spanish to English if needed.
Coaches can’t write your personalized story without your input. Coaches can’t write your story without you, but the process is easy, and they can help you through each step. Donors who aren’t comfortable using a computer to write can even send their story to their coach over text.
Coaches can tell you how many visits your microsite has received and how many people have completed the registration process as a potential donor. This information is also provided in your weekly microsite report.
Coaches can’t tell you about potential donors, including who has registered or where they are in the donation process. HIPPA, a law designed to protect the privacy of medical patients and information, prevents coaches from talking to you about any potential donors. However, if you have a donor who has already contacted you, the coach can speak to both of you about the process.
Coaches can do a Zoom call. Coaches are happy to arrange a videoconference call to explain the kidney donation and transplant process to you, your family, and your donor search champions. Calls usually last 20–30 minutes.
Coaches can’t do in-person presentations for specific patients. All the donor search coaches work remotely and support multiple microsite patients, so they are unable to do in-person presentations for individual patients.
Coaches can provide step-by-step instructions for how to share your microsite on social media. For those who are less familiar with social media, coaches can walk you through the process of creating content and posting on various social media channels.
Coaches can’t share your microsite on their personal social media. Coaches can help with posting on your social media pages, but they can’t post a link to your microsite on their own.
Coaches can provide educational resources. Coaches have access to a wide range of educational information, resources, and materials on living kidney donation and transplantation.
Coaches can’t offer medical advice. Coaches are not medical professionals. They can talk about the transplant process with you but they can’t discuss the medical specifics of your case or give you any medical recommendations. Medical questions should be directed to your transplant team.