Episode 4: Connecting Patients and Sharing Lives

An unwanted diagnosis doesn’t mean you have to feel alone anymore. The resources and communities now available to patients make living with a disease much more of a connecting experience than in the past. Join Robin Kingham, Education Resource Manager for the Crohn’s and Colitis Foundation, as she describes how patients including herself connect their lives through in-person and online resources that can be just as effective as their medical treatments.

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Full Transcript

Announcer: It’s time to think differently about healthcare, but how do we keep up? The days of yesterday’s medicine are long gone, and we’re left trying to figure out where to go from here. With all the talk about politics and technology, it can be easy to forget that healthcare is still all about humans. And many of those humans have unbelievable stories to tell. Here, we leave the policy debates to the other guys and focus instead on the people and ideas that are changing the way we address our health. It’s time to navigate the new landscape of healthcare together. And here are some amazing stories along the way. Ready for a breath of fresh air? It’s time for your “Paradigm Shift.”

Michael: Welcome to the “Paradigm Shift of Healthcare,” and thank you for listening. I’m Michael Roberts, with my co-hosts, Scott Zeitzer, and Jared Johnson. On today’s episode, we’re talking to Robin Kingham. She’s the education resource manager for the Crohn’s and Colitis Foundation. And Robin, we met back at the Take Steps Walk here in New Orleans in 2013. We’ve had a chance to chat several times after that at different walks and at different events that we’ve been at. But, I guess, that kind of leads into the first question of how long have you been involved with these Take Steps walks?

Robin: It’s funny that you ask that, Michael. Monday, July 15th, yesterday, was my six-year anniversary with the foundation.

Michael: That’s great.

Robin: So I started out as a Take Steps Walk manager and I was a part of the Walk program for the first four years. And, two years ago, I transitioned into our education support and advocacy department. And I’ve also done our Team Challenge runs, our endurance training and fundraising programs. So, I’ve been involved with the foundation overall for eight years.

Michael: Wow. Very cool. And what was it that got you started in this whole route of patient advocacy of, you know, really working with patients, working with providers to, kind of, like bring this discussion more to the forefront?

Robin: I actually am a patient myself, that’s why I started with Team Challenge. But when I was diagnosed 20 years ago and when I was in the hospital, another person came to visit me. Like my doctor and my surgeon had one of their patients come and talk to me about, like, what life was gonna look like. And it planted a seed that I wanted to do that for other people, and that seed germinated for a long time.

One of my very best friends in the world found out about Team Challenge, sent me an email with the link and said, “You have to do this.” And I did it. It didn’t just change my life, it changed who I am as a person because it was that seed that had been planted 10 years prior could come to fruition. So, as soon as I got back from that event, I found out about the local Take Steps walk. I signed up for another race. I started looking for a job with the foundation. I started writing a column for my local newspaper about my journey. Like, I just wanted to be able to do for other people, to advocate, to support, what that weekend had done for me.

Michael: Absolutely. One of the notes that you had actually posted to Facebook was about just how many people actually have these conditions. You know, this was, you know, back on World IBD Day, but you had posted that there was over five million people living worldwide with Crohn’s or colitis of some form and about three million of those people are here in the United States. Obviously, this affects my family in a big way. My daughter has Crohn’s and so this is something that we deal with every day.

You know, I’m interested to hear just…I keep referencing your Facebook page because we are friends and I’m stalking for a reason. But I did get to see, you know, my wife was responding. My wife, Rebecca, was responding just how much of an impact you’ve had with our family and how much that’s made a difference. But I’d love to hear more about just your involvement with other patients? What that’s been like over the years? And then, you know, after we get through that, tell us a little bit about what you’re doing now as the education resource manager?

Robin: So one of the things that I love about the foundation and it really made me fall in love with my job is the support aspect. I mean, the mission is to find cures, which that equals research. But then, there’s a second part of our mission, to improve the quality of life for patients, both adult and pediatric patients. And I really take that to heart. So, through Take Steps, it’s building that community of support, which is what I found personally from Team Challenge but introducing patients to other patients, listening, having someone who actually knows what you’re going through, has experienced it, it really makes a difference in your mental health and your ability to get through the day. So through Take Steps, it’s building that community. It’s introducing families like yours to other families with small children that are, you know, going through the same thing.

Robin Kingham Quote: Having someone who actually knows what you're going through, has experienced it, it really makes a difference...

Golly. Just yesterday, I was on the phone with a mom of a patient who had questions and needed support and we were on the phone for over an hour, probably an hour and a half. And I’m kind of like tearing up a little bit just thinking about it. It’s being able to provide hope for people in a situation where they’re confused and they don’t understand and, “What do you mean? Now I have a chronic illness that there is no cure for?” So, it’s letting people know that there is a new normal and giving them hope for a normal life. A normal, long, full life.

Scott: Yeah. You know, that’s something that Michael and I often discuss about the potential benefits of patient communities in general is, you know, simply knowing that you’re not alone. It could be diets that have been working, it might be how to deal with the medications that have been prescribed or other medications that are working for other people, but that not being alone. Can you tell us a little bit about the value you see? I mean, you’ve kinda hit upon it already, but about getting that patient into the patient community, you know, getting that group into the patient community.

Michael: And specifically in-person events because that’s definitely been one of the big places that I think our family got that sense of we’re not alone.

Scott: Yeah. That was something I did. I actually took a walk with Brenna and I think she was dressed in a super outfit of some sort, a super-person outfit, a superhero outfit of some sort. But, yeah, maybe just touch upon that a little bit. I think that’s a good thing for people to realize.

Robin: Yes. That year Brenna was our hero when she was Wonder Woman.

Scott: That’s right. She was Wonder Woman. That’s what I was trying to say.

Robin: I remember. So, first I’m gonna speak from my personal experience if that’s okay. And then, like, bring that out into what I do for the foundation. So, the first 10 years of my diagnosis, I wasn’t trying to hide it but I didn’t talk about it. I mean, I was in the hospital at first for three weeks. I ended up having surgery, like, it was very dramatic. My youngest daughter turned one while I was in the hospital. Like, took her first step in the family visiting room at the hospital. So, I mean, it was just a very dramatic experience for me and I wanted to just get past it. Like, I was feeling better so I just wanted to move on with my life. And I felt alone. I felt isolated. I felt I didn’t take my kids to Mardi Gras parades. I let my mom or my sister take them.

I didn’t take my kids to amusement parks because I knew I was gonna have to be running to the bathroom or I might not be feeling good or all of these other things that I was trying to conquer on my own. And as soon as I personally met other people, thanks to the Crohn’s and Colitis Foundation, that completely understood what I was going through and were living like their best life. They were running half marathons and traveling and doing all of this stuff that I had kept myself from doing, it changed the way that I saw how my life could be. I mean, down to my core, it changed everything. And I was a different person after that program just knowing that I could do all of these things outside of my house and be fine. And I don’t know if that makes any sense.

But then for the work that I do now in the education department, one of the things that I do is try to recruit support group facilitators and help them build support groups in communities where we don’t have, like, an actual physical chapter office or we may not have a walk or an event taking place. Because, the importance of seeing someone, being in a room with someone and talking to someone face to face, it changed my life. I know that it can change other people’s lives because even though we have online support communities, the foundation does, there’s chat groups and Facebook and all these other things, advocacy, YouTube channels, it doesn’t…nothing can compare to sitting down with someone and looking them in the eye and sharing your experience and hearing their experience.

Jared: Robin, and thank you first and foremost for being a part of patient advocacy in general and being able to share your story and being able to make that connection and let people know that they are not alone. I think it’s that in itself is so admirable to hear stories of people like you who are doing your best, you know. You very well could have just said, “Hey, great, now I’ve figured it out for myself but I’m not going to pass that on to anybody.” And instead, you’ve made it your mission in life. So I wanna thank you first and foremost just for everything you’re doing involved in it.

Now, part of what Michael and Scott and I see on a regular basis, you know, you just mentioned kind of the difference between in-person interaction and online interaction. And, you know, we do see a lot of interaction in social media communities, like you just mentioned some of them, Facebook, YouTube, Twitter, wherever they are. They have all grown in recent years within the medical community. Social media has just been a big part of my interaction as well. I’ve loved being involved in some patient communities online and see and witness how they are changing the face of being a patient, I guess.

I’m curious how you feel like how that helps with patient community service? First and foremost, to have online social media resources and communities for patients? And then second, how that does differ from in-person events? If that’s something you could share a little bit more about with us. I’m curious how you think about that.

Robin: So I think that the online communities are so, so valuable. I even recommend some online advocates who do their research and provide accurate information about disease, the science, the treatment, and who are positive in providing hope for the people that follow them. So, there are people, groups online that I do recommend because they have that positive message but they also have factual information about the disease. Which is very important when you’re doing searches on the internet. I usually tell new parents, “Put your hands up and step away from Google.” You know? Because there is so much misinformation out there as well. So when you’re doing joining an online advocacy community or support community, I’d recommend just doing some due diligence and making sure that, you know, they’re providing accurate information.

Scott: Just to jump in on that, that’s an interesting point you bring up, Robin. I do think what you do is very important, not simply because you have online but you’ve got good vetted online information. I can’t tell you how many people that I’ve spoken to on the practitioner side that have to fight misinformation. So having information that’s out there and vetted that is useful is so critical.

And I think that’s one of the things that really impressed me about…when I reviewed some of your information up online. It was that it was from patients, it was from physicians. It was really a community-based effort to get good solid vetted information. And that’s a critical takeaway for many patients who are listening to this because I think you’re right. You can look up anything you want on Google and find whatever you’d like. That’s not gonna be helpful.

Robin: And find research to support it.

Scott: Probably, right. Whatever that “research” is.

Robin: Exactly. And the same applies to in-person too. I mean, you wanna make sure that…like for the foundation, when I say recruiting support group facilitators. And they have to go through an application process and an interview process and a training process to be a support group facilitator for a group that we list on our website. And all of our support group facilitators are 100% volunteer. So, in all the communities that we do have support group facilitators, you know that they had to fill out an application. They did go through an interview process. They did receive training, and they do have access to either me or their local education manager for support from the foundation.

We also have our Power-of-Two program, which is more of a virtual-based. You have to submit, answer a questionnaire about your specific situation and our IBD help center then matches you with a peer mentor who has already gone through that situation, to where you can talk to someone, whether that be on the phone, or Skype, or email, text. I don’t know, Snapchat with someone who, you know, has already gone through what you’re going through.

An example I like to use is someone reached out to me about having J-Pouch surgery and they really wanted to talk to somebody else who had already gone through that. So, I immediately went through the Power-of-Two program to match him up with someone who had had that surgery and come out on the other end and could give him real answers about what the experience was like.

So, whether that’s the in-person support groups, through the foundation or through another, like, hospital system or doctor’s office, the Power-of-Two program. I mean, we also have online support groups where it’s a four-week session. And that’s for patients or for parents of patients or caregivers. So you could go onto the Crohn’s and Colitis website and sign up for a four-week online support group where you call in at a specific time for that.

So, we, and I say we as the foundation, try to offer support to the community in the way that best suits their needs. So we’re trying to do outreach in person and online and through social media, you know, and then we have some social media…we have some Facebook support groups that we’re testing. We started a J-Pouch Facebook support group. We just started a men’s support group and a women’s support group separately for the LGBTQ community. So, we are trying to reach out to people where they are and support them where they are in their IBD journey and help them find hope and a better way of life.

Michael: That’s awesome. Robin, I wanna share my family’s experience for this summer, if you don’t mind, because this kind of leads into more of some of the other responsibilities that you have and working with camps and working with Camp Oasis. But, specifically, I wanted to talk about my daughter getting to go for the first time this year. She just turned 9. And so, you know, when she went, she was still 8-years-old going to the camp.

And my wife Rebecca is the one in our family who knows the most about how we’re keeping up with my daughter’s condition, how we’re keeping up with the doctors, how we’re keeping up with all of the activities, but I was not really aware of Camp Oasis before this year. I hadn’t really, like, looked for that information, hadn’t thought about my daughter being old enough to go to it. And then we received a scholarship from a local group. This is a foundation called Maddie’s Miracles, and it’s the Plauche family, Brent, Tammy, and Maddie. They were a family that we met through the walks years ago now, I think it was back at her very first walk we might’ve met that family. And they reached out to us and said, “Hey, we want to pay for you to go to this camp. We want to pay for your family to be there and experience this together.

And so we were all up in Georgia, you know, sending our daughter off to camp for the first time and there’s all those fears and concerns that you have. Will my baby be okay? And, will all those sorts of things work out? But then you look around and see other families that are exactly like ours. We don’t have to worry about whether the camp will understand that our daughter needs a break sometimes. We don’t have to worry about whether she’s gonna get the right food throughout the week, whether things are gonna be okay. It was covered. They got it. Everybody there understood what we were going through.

And so my daughter came out of that experience, just thrilled about it, exhausted because it was a very full week, but just absolutely thrilled to be a part of this group of kids, this community that all got it and that supported each other at a level that she’d never really experienced before. Even though we’d been to the walks, even though we’d been to these other things, to be there in her cabin, in with all the other girls and with all the counselors that were in our cabin, all of them supporting that journey that they have to go through together was truly a blessing for us. It’s something that I’m sure we’re going next summer. It is just to say like how much of an impact it’s made for us. And I know that you’ve already been through some of these camps this year, I’d love to hear more about this aspect of what the foundation puts on and the reach that it has for the community?

Robin: I’m so glad that Brenna got to go to camp, and we have 12 camps across the country, 12 regional camps. And, right now, we’re averaging about 1,200 kids per year. Each camp location, you know, the number of kids that can vary, that are able to attend based on the size of the camp that we use. Georgia camp is one of our largest camps and I’ve had the…This year I went to the camp in Colorado, I went to the camp outside of Seattle, and I went to the camp in southern California. So those camps pretty much serve almost all of the states on the western half of the United States. We also have a camp in Texas, where all of the kids in Louisiana and Mississippi…That’s the chapter that’s here, the walks that you guys go to. Our kiddos can go to either the Georgia camp or the Texas camps, so we’re lucky that we have a choice here.

Camp Oasis is one of my favorite things that we do as a foundation because for these kiddos, like you said, you pulled up as a parent and you saw all these other families and you felt confident sending Brenna. I mean, we have medical directors. We have a full nursing staff. We have mental health professionals on-site. Almost all of our counselors are IBD patients themselves and probably former campers. To be honest, I say almost all because this year my daughter got to be a counselor at one of the camps and she’s not a patient but she grew up with me, you know, as the patient. So that was a different perspective also. Some of the camps that I went to, some of our nurses are even patients and former campers. It’s so moving the community that Camp Oasis has built for our kiddos that they have for the rest of their lives.

It’s setting up that community of support very early on in their disease journey. They have regular camp activities just like kids without any problems. They have high ropes and zip-line and swimming and, like you said, it is a very full week, but then we also have nap time or quiet time or cabin time and our medical professionals go around and visit all of the cabins. The kiddos can ask questions that they wouldn’t normally ask in front of their parents, questions that they wanna get the doctors to answer. And they have that opportunity in a very comfortable environment. They’re surrounded by their fellow patients and the medical professionals they need to feel safe in order to be able to participate fully in all these activities.

Michael: One of the things that my daughter took away from the whole week was, at one point, one of the doctors there had one of the kids lie down and, like, pulled up their shirt enough to show their stomach and the doctor drew out the full digestive system on this camper’s stomach to show, like, this is how your body actually works. And so when I was talking to Brenna about it, it was very much this discussion of, “Oh, yeah. No, I understand how that part works and I understand why my body is doing this and I understand what’s going on inside.”

And so it was really fun to hear her through that kind of fevered anticipation and excitement of, you know, recounting all the events. It was really interesting to hear that education component that she was able to take away from it. And it’s not just a good time, she now knows more about her body. She now knows more about what she needs to do to face this in an ongoing way. And one of the things that I wanted to comment about that was just before our family dealt with this disease and before I came to this company to work, I knew very, very little about healthcare. So when we started facing this disease, we knew nothing about where to go. We knew nothing about who to ask for help. And as I think back over the journey that we’ve had, you know, we’ve connected with support groups. We’ve worked with our doctors very closely and the doctors have been very helpful in that. So I wanna balance that component of this.

This is very much about getting the right resources, the right education, the right care, as well as having somebody for that support, having somebody for the emotional times where we just don’t know what to do and we’re just lost. And we even have the options all laid out in front of us, we just don’t know what’s manageable for us as a family. And so I think about our going through those experiences with other people. The fact that we got to go to this camp at all, that another family noticed us. This wasn’t something that the hospital did for us. This wasn’t something that the government did for us.

This was people helping people and I think that’s what blows me away about not just our family, but the way that patients are experiencing conditions today. I know that that’s been…you know, we’ve talked several times, Robin, about how much of an impact this has had on your life, how much you’re seeing in other people’s lives, and I would wanna say, “Thank you.” I wanna say, “Thank you,” not only to you, but I think to other patient advocates that are out there that are fighting this battle. It really matters. It matters for my family’s lives. It matters for other families lives all around the country and all around the world.

And we’ll go ahead and close there today. And, again, Robin, I thank you for your time and I’m excited about this shift that’s happening in healthcare. I’m excited that patients are able to be a part of this process beyond just going and hearing what the doctor has to say. We can do something about it and bring care and bring comfort to other people. So, thank you again. “Paradigm Shift in Healthcare” is brought to you by P3 Inbound. You can find our full archive of episodes at paradigmshift.health and recommend a guest or topic on Twitter @P3 Inbound.

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