This “#TalkHITwithCTG” series is brought to you by our partner CTG Health Solutions (CTGHS) and the episodes were broadcast live in CTGHS’s booth at the The HIMSS15 Annual Conference and Exhibition. The interviews were recorded and will be published on a regular basis on intrepidNow Healthcare. Bookmark this page to follow along with Patient Advocates, CIOs, CEOs and other thought leaders from health systems across the country. Also, read more about why CTGHS is the trusted advisor to over 600 health systems and providers.
Carly Medosch – @HISTalk Patient Advocate Scholarship Winner
Carly joined us to tell us why it was important to her to win the @HISTalk Scholarship, what she hoped to accomplish at #HIMSS15 and to educate us about Crohn’s disease. Carly has accomplished so much as an advocate and her thought leadership has influenced many!
We discuss the following with Carly on this episode:
- Her diagnosis, at 13 years old, after 6 months
- How she had obtained enough medical education to warrant an honorary doctorate, “I’ve spent 21 years as a Super-User of the Health System!”
- How she considers her illness a credential, along the same lines as my MBA or project management certification
- Why patients should be attending conferences like #HIMSS15!
- #HIMSS16 Challenge – Every vendor that has a booth at #HIMSS16 should bring (at least) One #PatientAdvocate
- Observations from #HIMSS15 – Special recognition to some vendors that deserve to be highlighted
Guest Bio About Carly
CTGHS was inspired to create a special “series” of interviews on Patient Advocacy including ePatient Dave, Regina Holliday and the HISTalk Patient Advocate Scholarship winners (funded by CTGHS). We learned so much from them, were inspired by them, and look forward to supporting each of them in their advocacy going forward.
- Dave deBronkart – @ePatientDave – The Original Patient Advocate
- Regina Holliday – @ReginaHolliday – Founding Artist, #TheWalkingGallery
- Amanda Greene – @LALupusLady – @HISTalk Patient Advocate Scholarship Winner
- Carly Medosch – @CarlyRM – @HISTalk Patient Advocate Scholarship Winner
- Melanie Peron – @leffet_papillon – @HISTalk Patient Advocate Scholarship Winner
- Tami Rich – @BostonHeartMom – @HISTalk Patient Advocate Scholarship Winner
You’re listening to Intrepid Healthcare’s exclusive coverage of the HIMSS Annual Conference and Exhibition. Welcome to HIMSS 15 direct from Chicago. Our coverage is brought to you by CTG Health Solutions. Your trusted advisor for healthcare IT advisory, and consulting services. And now, here are your hosts, Joe Lavelle and Rayanne Thorne.
Joe: Welcome to a special episode of Intrepid Healthcare live from the HIMSS 15 Exhibition floor in Chicago. I’m your host, Joe Lavelle, and I’m excited to be bringing you to Talk HIT with CTG with my friend and co-host, Rayanne Thorne. From our remote studio right here in the CTG Health Solutions booth. Rayanne let’s give a quick shout out to our fantastic sponsor, CTG Health Solutions.
Rayanne: We are so excited to be here at HIMSS 15 talking to patient advocates over the next couple of hours. But CTG has been instrumental in making sure that these patient advocates get here. They were part of contributing to the scholarship that brought them to HIMSS 15. And you can follow CTG @CTGHS, that’s @CTGHS on Twitter.
Joe: Very good. We’re going to get right to it today. Today we’re joined by Carly…
Joes: Medosch. Carly is one of the five HIS Talk Patient Advocate Scholarship winners, sponsored by non-other than our friend sat CTG. Carly, congratulations on your scholarship. Welcome to the show.
Carly: Thank you so much.
Joe: All right, before we begin out discussion, please give the audience a little bit about your background and how you became a patient advocate.
Carly: Well I actually, it’s a very long, long road. I was diagnosed with Crohn’s disease about 21 years ago when I was 13 years old. And that diagnosis took six months to even get. But I started off in the very grassroots, local fundraising, and that sort of thing. My mom and I have done a local Crohn’s and Colitis support group in Fredericksburg, Virginia, this is our seventh year.
And a few years ago I got more involved with Twitter and social communities around, just talking about health and things with patients. But also doctors, and other people in the healthcare industry. I got to go to the Medicine X conference in 2012 and that was really kind, kind of eye-opening to kind of make me aware to the fact that patients could be in those places where you potentially don’t think of them being.
Carly: So it’s almost like a glass ceiling that you didn’t even realize was there. And sort of, even within my own mind. Like, perception of where I could go as a patient. So now I’m the kind of person now that will find out about an event and I will say, “Are there any provisions for patients to attend either for free or a scholarship, or that kind of thing?” And if they say, “No, it’s not really for patients.” Then I kind of explain to them how patients can benefit and also how they can befit from having patients.
Because I really think that we can’t solve the problems in healthcare unless every single stakeholder is at the table. And that’s not just providers, and payers, and health IT people. But patients and everybody in that same room.
Joe: Couldn’t agree more. Carly, you made a great point in your write up for the scholarship I’d like to pass on to our audience. You pointed out, there may not be one patient on stage here over these four days, certainly we applaud HIS Talk, HIMSS, CTG, making it so you could be here. What do you think we could do between now and next year to make sure there’s 500 of you guys her, and there’s many, many on stage?
Carly: I almost think it’s sort of the reverse of what I was talking about when I got to go to Stanford. Was I think some of these people don’t think about having patients. I think, just that awareness that, yes you can invite patients. Or if you have a booth, invite a patient to come and speak. I know e-Patient Dave was here yesterday speaking at one of the booths. That’s really great, but it’d be great, like you said, if we had 500 patients out of 40,000, maybe every booth brings a patient with them. Or every panel has a patient.
Joe: I love that idea. There’s a challenge, every booth brings a patient.
Rayanne: Every booth…do you hear us HIMSS 15, every booth brings a patient.
Carly: And if people say, “We don’t know where to find patients?” Definitely reach out to me, reach out to Regina, we all know a ton of very, very well qualified people who would love to have that kind of opportunity.
Joe: All right, we’re laying it down. HIMSS 16 in Las Vegas, every booth brings a patient.
Rayanne: Ever booth bring a patient. We’ll start Tweeting that out. I can spend that next year doing that.
Joe: I’m going to set tweets for one time a day between now and then.
Rayanne: Pushing it out. I like it.
Joe: I love it.
Rayanne: So tell us, give us a break down of Crohn’s?
Carly: Well Crohn’s is really fun because…
Rayanne: Crohn’s is really fun, I never thought I’d hear that.
Carly: It’s not fun, but it’s hard to kind of explain in a nutshell because it affects people differently. And when I was first diagnosed, that was one of the really challenging things for me. Both in terms of managing my condition, but also physiologically. You know, being able to find people that I related to.
So the kind of textbook Crohn’s Disease definition is it’s a chronic illness, there’s no cure. We don’t know what causes it, but they’re working with the human genome project and that kind of thing to kind of crack that code. But it primarily affects the digestive system. And that can go all the way from your mouth all the way down. And it’s sort of, like if you think about having ulcers, but kind of super ulcers.
And in Crohn’s Disease, it can affect the entire intestinal wall. So you can have an ulcer…
Rayanne: Just sores on the whole…
Carly: Right, but it can go all the way through so that your gut is leaking out into your abdominal cavity. It can be extremely dangerous, and a critical situation. But for me, when I was younger, I had a lot of intestinal narrowing. So any time I would eat anything, I would throw up. And I was a pre-teen, I was a high school student and all that kind of stuff. So I’d be out with friends and I would just casually kind of walk off to the restroom and vomit and come back.
I didn’t make a big deal about it because, at least I was feeling well enough to be out. Because I dealt with a lot of fatigue, you have a lot of trouble sometimes, when you are able to eat, you’re not able to really get the nutrients from the food that you are eating. So you see a lot of people that are, you know, malnourished. A lot of problems with anemia, all that kind of stuff. And then, you know, you can be in a lot of pain. Like really severe cramping.
And then also, young people have arthritis type symptoms. And I think, a lot of chronic illnesses also have a lot of mental health components. So I don’t know if it’s a symptom of that whole situation, but there’s a lot of anxiety and depression, and especially if people have more traditional bathroom urgency type of issues. You always know where the bathrooms are, and if you would know where the bathrooms are, anywhere that I am, definitely ask me and I’ll be able to tell you.
Rayanne: First thing you do is scope out where the bathroom is.
Carly: Yeah exactly.
Rayanne: That’s a smart thing.
Joe: Carly, you said that you consider your illness a credential. What do you mean by that?
Carly: Well, sometimes people will say, “Oh I went to school for ten years to be a clinician.” or, “I needed to get this many credit hours to earn this certificate or to become a nurse.” Ad I’ve spent 21 years as a super user of the health system. And so, you know how you can get honorary doctorate, I would love to have some kind of provision where patients can get some kind of certificate.
Rayanne: Maybe a big, giant “S” to where on your chest, “Super user of the health system.”
Carly: I got my MBA a few years ago. And if you’re an executive, you can do an executive MBA Program. And they will count a lot of your work experience towards your degree.
Rayanne: That’s exactly right.
Carla: But where is the school that will let me count my patient experience towards my doctorate?
Rayanne: It’s interesting.
Joe: You make a great point. We were discussing with Amanda, my mother has Lupus. And she’s had to manage it over the past 30 year. She probably knows as much as anybody about at least how to manage that. And it is a credential.
Rayanne: In particular for herself. Right, it means a great deal to know your own health.
Joe: Well for herself and for others that she can help.
Rayanne: Let’s talk about The Walking Gallery. So you’re here, you’re part of the HIS Talk Scholarship. What does it mean to you to be a part of #TheWalkingGallery? So tell us what that is all about.
Carly: So this is a very timely question because I’ve known about The Walking Gallery, been a supporter of The Walking Gallery for many years. But it wasn’t until very recently that I asked Regina is she would paint my jacket. And she painted my jacket here at HIMSS. And she just finished painting it, maybe an hour or two ago.
Rayanne: That’s wonderful.
Carly: Yeah, so when we have our meet up later today, I’ll be my debut wearing my story.
Rayanne: Make sure you tweet out pictures of that because we would love to re-tweet it and make sure everybody sees it. So where is it right now?
Carly: It’s in the HIS Talk booth.
Rayanne: Okay. Hanging up in there. And she painted it so people could watch her painting it?
Carly: Yeah, so she’s been painting here live this entire event. So yesterday she painted one for another lady.
Rayanne: Great, okay, wonderful. Thank you for being a part of that. We’re real excited to have you hear. And enjoying HIMSS, helping us enjoy the HIMSS conference. Anything else you would like to achieve while you’re here? Anything else we can talk about?
Carly: Well, so being at HIMSS has been a really interesting experience. Because I think, I was at the keynote this morning and they’re talking about, “You need to talk to patients. We need to listen to patients and really help them solve their problems, meet their needs.” And when I go up to some of these booths, I’ve been pleasantly surprised. Mostly it’s been a positive reaction. People might be a little confused, “What do you mean you’re a patient?”
Rayanne: “What are you doing here if you’re a patient?”
Carly: You’re not representing a hospital system, financial department. So they kind of don’t know what to do with me sometimes, but most of the booths have been very friendly. A lot of them have been very excited. And one of them even was trying to get me to stay for a while. But I had another appointment I had to run off to.
Probably the most exciting one that I’ve been to so far in terms of the technology, and also their reception, was the Panasonic booth. They have a connected healthcare solution product. And sort of a suite of services that’s really interesting. And I would ask them some questions and I would say, “Well what about this and what about that? And can the patient impute what they think their goals should be?” And all that kind of stuff. And it’s for inpatient setting. And they said, “Oh yeah, you can do all that stuff.”
So it was really cool to be kind of, asking some tough questions. And they were like, “Yep, it could do that. Yep, you could do that.” Which a lot of times they’ll say, “Oh no, we don’t have that capability.”
Rayanne: Joe mentioned this earlier with another guest about how healthcare has basically been designed about the doctor. We would love to see a shift and see it really embrace the patient. And not think of the patient as a chart number or a consumer. But really understanding that the patient could be their mother, could be their daughter, could be their niece or nephew, or themselves. So you have any words of advice? I mean, being pulled in different direction right? You have people is booths that want you to stay because they know that you’re words can bring more people to their booth right. So what words of wisdom do you have to share with us?
Carly: I think that sometimes people, they think that involving patients is some really big hurdle. It seems kind of funny to me that people can solve these inner-operability problems, and they can hash out the government regulations, and run a multi-national healthcare system, but the idea of finding patients and incorporating their feedback, is daunting to them.
We’re not really that scary, and we’re not really that hard to find. So I just think that, making it a priority is really important. But also, I’ve been in situations where I am invited somewhere, and I’m on a panel, or I’m invited to give feedback. And I might be the only patient there. Or one of very few patients. And I think it’s really important also for people to know that, you can’t just have on patient and say, “Okay Carly, tell me what is the patient prospective?” Because if it’s me, that’s my story, that’s my preferences, that’s the kind of person that I am and how I want my health system to operate. But if it’s my mom, or my dad, or my brother, or your mom, or your dad, or your brother, they’re all going to have different needs.
And your needs even change. So we have a lot of issues with fatigue of being a patient, especially in chronic care. And so a lot of time I need to be very engaged, but sometimes I don’t want to be, or sometimes I want to go on vacation and just sit at the beach and I don’t want to be having the expert on the latest research, and devices, and medication reaction that I can then educate my doctor and always having to be fighting.
And I think that it is important to kind of realize that there’s not just one patient voice, and that the idea is that you need to talk to patients. And talking to one is better than none, and talking to five is better than one, and talking to 500 is better than five. So just as much as organizations can structure their programs that they bring in as many patients as possible.
Rayanne: That’s a great message. And what a perfect way to wrap up your time here with us on #TalkHIT with CTG. It’s been a pleasure to have you here. Before we wrap up, how can folks reach out to you?
Carly: Probably if everybody knows about me already it’s through Twitter, so my Twitter handle is @CarlyRM and then I also have a link to my blog in my Twitter profile. And it’s blog.CroniCarly.com. Or you can just Google Carly Medosch, I think I’m the only Carly Medosch on the internet.
Rayanne: There you go. There you go. Well it’s been an absolute pleasure. Thank you for joining us.
Carly: Thank you really much for having me.
Joe: Great, that wraps up our live broadcast from HIMSS 15. Again we want to shout out a quick thanks to our sponsor CTG Health Solutions.
Rayanne: More than 25 years of providing HIT consulting expertise and innovative solutions to produce real result.
Joe: On behalf of our guest, Carly Medosch, and my co-host, Rayanne Thorne, I’m Joe Lavelle at Intrepid Healthcare’s live coverage from Chicago. We’ll be right back.