Episode 49: Patient Resources for Patient Empowerment

At Fresenius Medical Care, we pride ourselves on our patient-centric approach to everything we do. We understand that starting dialysis is an enormous lifestyle change that impacts the everyday lives of our patients and their families, so providing our patients with as many resources as possible to find success in their chosen dialysis modality is one of our top priorities. We strive to provide as much educational, emotional, and mental support as we can for our patients to empower them and give them control over their lives and their treatments.

In this episode of Field Notes, Dr. Michael Kraus, Associate Chief Medical Officer of Fresenius Kidney Care, is joined by special guests DeShawn Dorsey, Kidney Care Advocate Manager, and Kaelyn Bamford, Kidney Care Community Manager, to discuss two key patient resources offered by Fresenius Kidney Care: the Kidney Care Advocate Program and the Kidney Care Community online platform. 

Dr. Michael Kraus: Welcome everyone to this episode of Field Notes. I'm Dr. Michael Kraus, the associate chief medical officer at Fresenius Kidney Care and your host for this discussion today. Here we interview the experts, physicians and caregivers who bring experience, compassion, and an insight to the work we do every day at Fresenius Medical Care. We pride ourselves in our patient centric approach to everything we do.

One thing that's really important to us is making sure we provide our patients with as many resources as possible to find success in their chosen dialysis modality. That means we treat patients holistically to empower them and give them control over their lives in their treatments. Starting dialysis is an enormous lifestyle change that impacts the everyday lives of our patients and their families. And for that reason, we strive to provide as much educational, emotional and mental support as we can for our patients as they navigate through their dialysis journeys. So today we're talking about two key patient resources offered by Fresenius Kidney Care. The Kidney Care Advocate program and the Kidney Care Community online platform from the Kidney Care Advocate program, we have Deshawn Dorsey, kidney care advocate manager and represent the kidney care community.

We have Kaelyn Bamford, the community manager, Deshawn Kaitlyn. Welcome to Field Notes.

DeShawn Dorsey: Thank you for having me.

Kaelyn Bamford: Thanks so much for being with us today.

Dr. Michael Kraus: Deshawn, let's start with you. Tell me about the Kidney Care Advocates program. Exactly what is it and what's your role as the kidney care advocate manager?

DeShawn Dorsey: My role is I'm the kidney care advocate manager for the Gulf Coast region and the Kidney Care Advocate program is a very essential program that we have here for seniors. We built a comprehensive program that allows our cases other known as kidney care advocates, to provide empowering education for our patients. We want to make sure that our CKD patients thoroughly understand exactly what's going on with them in kidney disease in our education classes, we discuss their GFR with them to give them a clearer understanding of what that is, what that entails. We also discuss the signs and symptoms, things to look out for, and we also go over dietary information, protein intake, talking to them about phosphorus and potassium, as well as sodium intake. We also talk to the patients about the different modality options about home PD, home hemo in center as well as translate informations. We also talk with patients about the different access need to do each modality that they decide to choose.

Dr. Michael Kraus: It's clear that you believe that empowering patients isn't just asking what they want to do, it's about education and information out of patients get paired up with the kidney care advocate and can they request a certain one if they know.

DeShawn Dorsey: So they can't request one that they want. But we do is we have cases throughout the country and we try to put a case in every single territory. So there are different ways to get a hold of a kidney care advocate or AKCA. We have online referrals where patients can go to Fresenius Kidney Care.com and they can request the education class and they'll pair with a case that's within their zip code. We also have our cases that work within the market, so they've partnered with physician practices as well with our incentive facilities where we provide SRT education for those patients. We get referrals from the hospital systems, we get referrals from the emails, from physician offices, online referrals. And once we get those referrals, the case reaches out with the patient. We set up appointment time where we can meet with them and then we conduct the education class.

Dr. Michael Kraus: That's a lot of kidney care advocates do for our patients. How many do we have and how many patients do we work with?

DeShawn Dorsey: We have over 200 cases with the case program, and last year we educated 58,000 patients with chronic kidney disease. And these are the educations as well.

Dr. Michael Kraus: And I understand there's there's a virtual kidney care advocate program now as well. Sounds like a great resource for patients that live farther away. Tell me what it looks like.

DeShawn Dorsey: It's just a great resource. We recently just launched We Hold the classes online virtually. We have eight slots per class. We do classes 10 to 15 times a week or 3 to 5 classes are offered a day. We have them in English and Spanish. We have it on Pacific Time as well as Eastern Time, so that we give patients different time zones where they can join our cause. We also conduct the classes and salaries for those that work Monday through Friday can not necessarily make it to one of the virtual classes throughout the week. They can attend one of the Saturday classes and they're just like the classes we do in-person with our patients. We just do it all virtually. And at the end of the class we do have materials that we email the patients for them to look over and share with their family members and friends about their disease. The different treatment options access, information, diet, information, things like that.

Dr. Michael Kraus: Caitlyn, this is a perfect time to switch to you because we're going virtual. Let's talk about the kidney care community. How does it work and who's it for?

Kaelyn Bamford: So the community is a online discussion based forum built for anyone affected by kidney disease to connect with other members for support and encouragement. It's really built on these three pillars, the first being the support and encouragement aspect. Users want to connect with people who are really walking in their shoes and living this day in and day out. The second is information and education on the community. We've built in articles divided by topic so users can easily access information that's relevant to them and what they're looking for in regards to their kidney care journey, as well as online and virtual events that may help them along their way. And the third is social interaction. We really aim to help these users connect with one another and two elements that really help the community stand out. Our community in particular is the first that we are open to anyone with a relationship with kidney disease. So that means we have home patients, we have in center patients, we have care partners which are as we all know, a huge part of patients kidney disease journey, as well as some transplant recipients and health care professionals. And the other thing that makes our community stand out is that it is open to all members, regardless of patient status at present.

Dr. Michael Kraus: That's a wide variety of types of patients and information. It sounds very interesting to see what's going on. It ranges from people that are just starting or maybe early CKD to all the way through transplant that that's impressive. What are they talking about online these days?

Kaelyn Bamford: There's a wide variety of topics that our members discuss. As you can imagine, one of the most popular is users sharing their experience, and especially users who are new to dialysis, asking questions about the process, what it feels like, how people set up their home supplies, particularly right now, we're seeing a lot of questions on travel. How do you travel with your equipment or make an appointment at a center out of state? And what kind of kidney friendly recipes are our members using?

Dr. Michael Kraus: And I love travel because, as you know, I love home dialysis. Fits right in. I'm guessing, given the fact that it's mostly patients talking. We also have moderators. What is the role of the moderator and what are they supposed to do?

Kaelyn Bamford: So that's where I come in as the community manager, making sure that all of our members are adhering to our guidelines of respect and also making sure that we don't cross that line of providing medical advice. We definitely want to leave that to the doctors, to the care teams, as everybody has individual care plans that are specific to them.

Dr. Michael Kraus: For both of these programs. Privacy seems like an important part. It's obviously a big deal. That's it for seniors, kidney caring for seniors, Medicare. What kind of privacy protections are in the kidney care community? And then I'll probably go to you just trying to ask the same kind of question to you.

Kaelyn Bamford: Obviously, privacy is very important to us and the community was built with the intention of letting all of our users remain anonymous. So you only need an email to register with the kidney care community, and that is only visible to you as the account owner. No one else on the community can see that email. And we also do encourage our members not to share private information on the kidney care community to protect their own privacy.

Dr. Michael Kraus: And Deshawn, what do the cases do to protect my personal private information?

DeShawn Dorsey: The same thing. So we do have our patients, we have HIPA forms that we have and fill out, and we don't share that information with anyone outside of Fresenius, especially with our CKD patients. They we do have them sign a consent form, a hip, a form for us to provide the free education that we provide, and we only share the information with them and their physician’s practice. We don't share that information with Fresenius. Our SRT patients. They are. So we do have HIPA forms that they sign when they first come to the clinic, and then we share that information with their physician as well as the their managers, social workers or dietitians. They're within the facility with their permission.

Dr. Michael Kraus: I think that's excellent. And on both of those platforms is very important. Kaitlyn, I'm going to give you one flag. What is the goal of the kidney care community? If you had to put your flag into the ground?

Kaelyn Bamford: I would say absolutely. The connection between the users we've seen firsthand users reach out about not wanting to feel alone or isolated, particularly when they're home and they don't have that in clinic community. So really fostering these connection opportunities for users to get this information from people who are walking in their shoes and experiencing what they're experiencing on a daily basis.

Dr. Michael Kraus: CKD certainly can be a very lonely experience and having a community does so much to the person's ability to function on a daily basis. That's tremendous. Deshawn Why do you do what you do and what's your favorite part of being a kidney care advocate?

DeShawn Dorsey: I've been with The company will be 20 years in February, so a long time. I love what I do. When I first started at 19 years old, my preceptor, that's one thing that she told me. She said, With dialysis, you either like it or you don't. And here I am, 21 years later, and I love it. The thing I like most about being a kidney care advocate is the success. The stories that I have when I meet the patients for the first time and they come into my office or I meet them in their home or at the hospital, and they're very nervous and wary about what information I'm going to give them. It's calming their fears that they have the fear of the unknown. And after we complete the education, the sigh of relief that they have and the big hug that they usually give me right afterwards, they ask them, Can I give you a hug? I feel so much better. Oh, my nerves are out the window. You explain everything thoroughly, you know, That's the things that I look out for and I really love with my job is to give those patients something back, to let them know that, yes, you are going through kidney disease, but your life doesn't stop. This is just your journey. That is other things you can do. You know, you can still do your favorite things, you can work, you can go to school, you can travel, you can do all those things, especially with doing home dialysis.

Dr. Michael Kraus: That's excellent. Thank you, Kaitlyn. Same question for you. Where is your passion in here?

Kaelyn Bamford: So it is such a privilege to see these users connecting in real time. The one thing that really stands out to me is how selflessly these users share their stories because they have a genuine want to help other users along. There can be care journey, which is just so powerful to see.

Dr. Michael Kraus: Both programs are just there to empower patients and help them on their very, very important journey. Can you share an anecdote about a patient or something in the kidney care community?

Kaelyn Bamford: One of my most favorite recent examples was a user we had on the community who will be starting dialysis soon and was asking questions about the process. They mentioned that they were overwhelmed and really just scared about what this would mean for the impact in their own life. We had 3 to 4 users immediately jump in and start sharing what their kidney disease journey has looked like and also encouraging this user not to be afraid, letting them know that there's life on dialysis and they can still participate in the things that they want to do, which was so great to see this community come in and rally around this user.

Dr. Michael Kraus: Where can people find the kidney care community? And we'll make sure we link it in our show notes for the listeners.

Kaelyn Bamford: You can find the kidney care community at community.freseniuskidney care.com. 

Dr. Michael Kraus: Deshawn, do you have a patient story or anecdote you want to share about the Kidney Advocate program?

DeShawn Dorsey: Oh yes, I do. I'll go back to the first patient I spoke to that decided to move forward from inside at home. And one of my incentive facilities there was a patient there who was really depressed. She'd just been newly diagnosed with kidney disease. She thought that she had time, that she can beat it going to end. And it was very difficult for her because her and her husband just retired. They bought a RV and they had a plan to drive up the Atlantic coast. But, you know, doing incinerate and think that was going to happen. So once I came into the clinic and I introduced myself to her and we talked, you know, I said, Hey, how are you? Ms.. Why are you missing treatments? I hear that, you know, you don't like being here. What's going on? Would you tell me a little bit more about how you feeling? So after we sit and talk, she told me, you know, that she wanted to travel. So I told her, Well, you can't travel. You know, you can do peritoneal dialysis or HD. She said, Well, I didn't know that I had options. So I discussed with her options and she ended up doing home hemodialysis, actually. And they when they got a generator connected to the back of their camper and they were able to go and drive up the Atlantic coast. And as she drove and every location she went, she sent me a picture everywhere she went with her and her machine. And when she came back to Houston to get her supplies, I did see her. I went to facilities. She gave me a big hug and said, thank you for not giving up on me. Thank you for talking to me in not passing. You know, she had her blanket over her head and I kind of picked it back to introduce myself to her. And that's one of my biggest success stories. And that was one thing that motivates me to talk to more patients about home, is allowing them to get their life back and go out there and enjoy it.

Dr. Michael Kraus: You know, I'm always thinking about how we care for our patients more holistically and keeping that patient first mentality at the forefront of everything we do. Just like both of you mentioned, the Kidney Care Advocate program and the kidney care community are invaluable resources to our patients, and I'm glad our listeners have heard more about them. Deshawn Kaylin, thank you for being here today.

DeShawn Dorsey: Thank you for having me.

Kaelyn Bamford: Thank you, Dr. Kraus.

Dr. Michael Kraus: And to our audience, thank you for joining us today. If you're new to the Field Notes podcast, you can download past episodes on the Apple Store, Google Play, or wherever you download your favorite podcast, please remember to subscribe to receive the very latest updates as they happen. Until next time. I'm Dr. Michael Kraus and you've been listening to Field Notes by Fresenius Medical Care.

Take care, everyone. And let's begin a better tomorrow.