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.
Amanda Greene – @HISTalk Patient Advocate Scholarship Winner
Amanda 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 Lupus. Amanda’s energy captivated us as soon as she sat down as you can tell from a couple of her quotes:
- “I thought Lupus was the kid with the runny nose on The Bad News Bears!”
- “Hugs and smiles are contagious, Lupus is not!”
- “I am married, but I am available for (Patient) Engagement!”
We discuss the following with Amanda on this episode:
- Her (mis) diagnosis
- The complications of traveling to #HIMSS15 with a chronic illness
- Disruption of personal time due to lack of interoperability – “This is why I came to HIMSS!”
- Challenging vendors to include patients in the design process
- What else she hopes to accomplish at #HIMSS15
Check out #LupusChat and join them on Sunday afternoons Bi-monthly at 3PM ET/Noon PT; Next Chat on May 3!
Guest Bio About Amanda
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 HIMSS15 Exhibition floor in Chicago. I’m your host Joe Lavelle and I’m excited to bring you 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 CTG Health Solution.
Rayanne: I think it’s the perfect time to share that CTG is a sponsor of the HIS Talk Patient Advocate Scholarship. So to that end we’re going to jump right in and make sure we get enough time with our next guest.
Joe: Absolutely, I can’t want to introduce Amanda Greene. Amanda’s one of the five scholarship winners that we had talked about. Amanda welcome to the show.
Amanda: Thank you, thank you for having me.
Rayanne: Amanda’s dancing in her chair.
Amanda: I like the music.
Joe: She’s been our most fun guest. Before we begin out discussion Amanda, just tell the audience a little about your background and how you became a patient advocate.
Amanda: Well, I was diagnoses with Lupus. But before that, I had failed, literally failed, ten mono test. Because when you’re 15 and tired all the time, that’s all doctors think you have.
Amanda: That’s like the one option. So then, I lived in Los Angeles, “Well you don’t have mono.” And after one test the nurse thought I was a little crazy because I said, “I haven’t kissed a guy since the last time you tested me for mono.” And that was depressing, so put me a teenage group for group therapy, because I must be crazy.
Rayanne: You must be nuts.
Amanda: I must be nuts. Next thing you know, I’m a nice Jewish girl from the valley and so group therapy said, “Oh you’re fine, you just need a little nose job.”
Rayanne: What? I am dumbfounded. I am dumbfounded.
Amada: Everybody has a fun story. So my pre-operative work, needless to say, my mom trusted the shrink, the physiatrist, I apologize. Anyway, so the pre-operative blood work they ordered, you know, everything has a fun name. And so it was a PTT test, and at the time, Mike Jackson had a song called PYT, “Pretty Young Thing.” So PTT, “Pretty terrific thing.” I’m going to be great at this for the nose job, that’s why they’re taking my PTT test.
Anyway, the PTT test came back abnormal. And it’s an elective surgery, and the responsible plastic surgeon came back and said, “This is an elective surgery, and you could bleed on the table.” Needless to say, six month later, diagnostic test, a blood time test. And I guess after five minutes, most people stop, but the phlebotomist was new, or a training phlebotomist, which most people at 15 don’t know what a phlebotomist is. So that’s a big word, but like…
Rayanne: That’s a big word. And it’s scary.
Amanda: Right, you’re like wow.
Rayanne: That’s net even a real word.
Amanda: Why can’t you just say lab tech.
Rayanne: Why can’t you spell that with an “F.”
Amanda: I like that “F” word. Okay, she ran out of like these little, she wasn’t putting any pressure. She ran out of the discs.
Amanda: To like take the blood. So the lab is like, “Why don’t you put pressure on it and say over five minutes.” And this was like 12 minutes later. I’m like okay great, so I obviously failed this blood test. Long story short, it’s not this, it’s not this. They did the bone marrow test, where they scrape the bone.
Amanda: “Well you don’t have anemia. You don’t have leukemia. And you don’t have any emias. And we’re not sure what you have just yet.” Months later, I got out of the San Fernando Valley and realized we’re close to Los Angeles and let’s go to Cedars and UCLA and get some big wig there.
Rayanne: Yeah, “Let’s go to the real place.”
Amanda: This obviously is not mono and something bigger. And finally they told me it was Lupus. And it’s Lupus. So this was long before House. And I’m like Lupus? The only thing I heard about Lupus was the guy that played a baseball game in Bad News Bears and had a…
Rayanne: I remember.
Amanda: I mean, it was dependent on people of a certain age. I remember Lupus had the running nose all the time.
Rayanne: That’s right.
Amanda: So I learned about Lupus. And by being a patient who questioned things, and my family’s not into alternate appealing, but a cousin of my mother’s is Jerry Jampolsky. So he’s always into, like you know, letting go of fear, and alternative medicine, and planning the healthiest way. We found, you know, a different way.
Rayanne: A different way, alternative treatment. Before we move on from this. Tell us what is Lupus? What is it?
Amanda: Well I will say Lupus is an auto-immune disease because that still scares everybody.
Rayanne: Yeah, well that scares them even more over the last 20-30 years right.
Amanda: Right, exactly. But it’s not contagious.
Amanda: Almost the opposite. Like hugs and smile are contagious, Lupus is not.
Rayanne: Okay. That’s great. I’m writing that down, that’s Twitable.
Amanda: Yeah, thank you. And I’ve Twitted that a lot. But hugs and smiles are contagious, Lupus is not. But it’s an auto-immune disease, which means that my auto-immune disease, my immune system tends to overreact. So flying to Chicago, somebody three rows ahead of me sneezed, I was like “Where’s the Lysol.”
Rayanne: Right, right.
Amanda: Just very, you know, you have to be prepared for like public things like a huge conference like HIMSS.
Amanda: So I’m just super aware of my, I mean, at the end, and I don’t want to define what Lupus is, because there’s 1.5 million Lupus patients in America, and everybody has Lupus differently. Common symptoms would include joint pain and inflammation, chronic fatigue, sensitivity to the sun. I mean, there are some commonalities, but everybody’s different. And like I recently had a mouth sore, and I’ve had Lupus 33 years as of two weeks ago. Happy Anniversary Amanda.
Rayanne: Happy Anniversary Amanda.
Amanda: Thank you. I mean right. So you got to celebrate while you can.
Rayanne: You do.
Amanda: And as my shirt says that I’m wearing today, Lupus awareness is fun, but Lupus is not.
Rayanne: There you go.
Joe: I love that.
Amanda: Thank you. But I try to just, you’ve got to find, I mean, with Lupus there’s another “F” word. It’s not phlebotomist but it’s flare.
Rayanne: Flare, okay.
Amanda: And when you have Lupus, you want to avoid a flare. But I like to live with flare, so that kind of shifted, that’s what kind of, I guess, what brought me eventually here. Was when I started shifting that idea of changing the word flare to flare.
Rayanne: What flare means to you, right, exactly.
Amanda: And owning it. Like I can avoid that flare, but I can find the other flare and find the balance.
Rayanne: Shine the light on what you’ve suffered, what other’s suffer.
Amanda: And there’s so many patients on-line that kind of embrace being sick.
Amanda: And I’m not saying anything is wrong that. We all have our diseases and we’re all different. I have my disease, not like I have my Lupus, but my Lupus is mine and I’m going to treated it my way. And you might not agree with everything that I do, but it’s my choice.
And I’m not choosing to say, “Oh I have Lupus and I should be in bed. And I really shouldn’t be walking at HIMSS for three days with all these, too many people. And what is somebody has a cold and I get sick.”
Rayanne: You have to be very careful.
Amanda: Why would I stop being a health activist? I’m not going to let that stop me, I’m going to what I need to do to be prepared. So I might be where orthotic insoles under my purple tennis shoes. I might have a lanacane patch on my ankle that you can’t see. I might have taken some pain medicine like Turmeric, which is an alternative. So you don’t know what I had to do to be here. But I look good right?
Joe: Yes you do.
Rayanne: You know, as you are talking Amanda, I mentioned earlier in an early interview that I’m a long time sufferer of asthma. And I have come to a place in my life as a 52 year old woman, that I know what I need to do to stay healthy. And no doctor can give me a new way to live my life. Because I’ve been healthy, really healthy, for the last 10-15 years. Knock on wood definitely, but it’s because I have taken my own healthcare into my hand and I know what to do the minute that I feel like I’m starting to get sick. And that’s exactly what you’re saying.
Don’t just rely on a doctor to tell you what to do to get better. Understand your body, understand what causes a flare, right, for you personally. Because it may be different for you than another Lupus sufferer. And then understand how you can change that path. How can you stop the flare? How can you use your own personal flare as a way to get a message out?
Amanda: Exactly. And sometimes it’s like you have to be a detective, and a symptom tracker. Like, “Oh wait I’m going to HIMSS for three days, I know I’m taking a week off.” Like once I get home, HIMSS isn’t over for me. Like I have down days, and then the shopping list of what my husband needs for when I get home.
Rayanne: That’s right.
Amanda: It’s like what do you mean water? Lots of water.
Rayanne: “I need water when you get home, and this kind of tea.”
Amanda: He’s like, “I need my Greek Yogurt.”
Rayanne: Well you know what works for you.
Amanda: And it’s all about preparing and whatever your chronic illness is. Whether it’s Lupus, or asthma, or something else. I think as patients, you know, we always say, “Oh it’s the healthcare provider.” But I like to think, you know, we’re partners in this. And it’s about, you know, at least here at HIMSS, you know, everybody wants to engage the patient. And if the patients aren’t engaged in realizing like, “This is my life and my body.” Nobody’s going to care as much about my body and my health as I am. I mean, a concierge doctor might get a lot of money, but they’re still not going to have a personal stake in it.
Joe: Amanda one of the things that I’ve really enjoyed the last year about social media is the emergence of Tweet chats. I know you lead a Tweet chat, I think it’s Lupus chat. Tell us about that and who joins, and kinds of what you talk about.
Amanda: Well like you said, the emergence of social media healthcare chats has grown immensely. And @TiffanyandLupus, Tiffany Peterson, actually found me on Twitter. She was diagnosed, I think 48 days before she found me on Twitter. And we realized there’s all these chats, and maybe they’ll talk about Lupus during May, which is Lupus Awareness Month. But we have Lupus all year long.
Rayanne: That’s right.
Amanda: And so, how do we start a chat? Do we need a doctor? And basically to start a Twitter chat you need to go to Symplur and say, “We’re claiming this healthcare hashtag? And we’re claiming this ID.” And to Tiffany and I, we work together because two people with Lupus is like one superwoman. So every other week on Sunday afternoons, at 3:00 eastern, 12 noon Pacific, you can find us on Twitter #LupusChat. And TiffanyandLupus, and I, we co-moderate, we’re there 365, 24/7 because if you have Lupus, your questions sometimes don’t wait.
Rayanne: They don’t wait.
Amanda: And when you’re newly diagnosed, and you find LupusChat, you’re like, “Hi, help.” And then, you know, I don’t know how Twitter works, but “I got Lupus, and help me.”
Rayanne: The best kind of group therapy right there.
Amanda: And so we offer resources, support, and friendship. Which is, to me, my first support group, going back a little bit as to why I started Twitter, or why Tiffany started Twitter chat. Was like, she was newly diagnosed and needed a support group. And it’s hard to get around when you’re in New York to get to where you need to go, and sometimes internationally.
But for me, there was five people in my first support group. And with LupusChat, a slow day we will have five people in our LupusChat from all over our country.
Joe: That’s great.
Rayanne: That means you’re giving really individualized information and help.
Amanda: And internationally we have this wonderful girl from Germany that participates when he can, because it’s the middle of the night, but sometimes you have pain insomnia, which is like your pain is so bad you can’t go to sleep. “Hey, oh my God, wait it’s Twitter chat, I’m so happy I have pain insomnia.” I mean, when you see Tweets like that, I get too excited.
Rayanne: You are great.
Joe: You are allowed to dance on the table.
Rayanne: You are.
Amanda: But we’re sharing, and she’s like, “Oh for me it’s called this thing called Cell Salts.” Which is like 12 cellular salts. Which when I asked my doctor, “Hey I have a German friend who says this is what her doctor recommended.” And he’s alternative, and internationally you have to explore alternative resources. And I’m not saying I’m a doctor, we always say, “I’m not a doctor. I don’t play one on TV. I’m a patient who this worked for me.” You know, like a disclaimer.
Joe: Well it’s so important, I think, to share, whether it’s Lupus or something else, with the people that are going through it. Because different doctors in different parts of the country have been trained different ways, they do different things. And if you can share and find something that works for you, you know, what do you get with a doctor when you go visit them?
Amanda: 15 minutes if you’re lucky.
Joe: If you’re lucky.
Rayanne: If you’re lucky. 15 minutes would be a lot.
Amanda: And for me, just for a regular good check-up and I have no questions, 15 minutes is, I’ve gone over what I’ve done for the last six weeks. Like there’s no time to discuss, “Well what am I doing in the next six weeks, and how can you help me transition my medication, or adjust what I need to do to figure it all out.”
Rayanne: Which talks about the importance of interoperability. And making sure that, you know, information is shared everywhere.
Amanda: I didn’t want to go there.
Rayanne: I’m ready to go there.
Amanda: But it’s why I’m at HIMSS. Because too many, I’ll have a lab test at my gastroenterologist, and then I go to see my rheumatologist four days later, and they’re already at the same hospital, theatrically all the computers are connected, crossing my fingers. And he wanted to give me the same test. I’m like, “I had ti four days ago.”
Then I’m wasting my pre-appointment time. So right now I have a good relationship with his office manager. I explain, I’ve already had this test with my rheumatologist, please look it up so I’m not spending 20 minutes to your time and making his day before the appointment time.
Rayanne: Please find it.
Amanda: Because then everybody else, because I’m not late because I’m Amanda.
Rayanne: I want my time. I want my time with my doctor.
Amanda: But I want it to be quality time. And if it’s impaired, or like, and this is, I know, ideal, and this is I’m sorry to all the healthcare practitioners that are like, “Oh you’re living in a dream land.” If I could e-mail my questions to you or somebody in your office before hand, and perhaps you could go over them for two minutes before you come into the room, and you know them.
Rayanne: And you kind of know what my concerns are ahead of time.
Amanda: So it’s not, “Oh I’ll get back to you on that.” And then I’m the one that has to follow-up. And I had a really great doctor for 30 years, who I love him, and he retired. And he’s allowed to retire, he’s allowed to have a quality of life, and range of motion, because that’s what it was all about for me. It was making sure that I had a quality of life, and range of motion. So it would be selfish of me to not let him be able to do that now.
But then I went doctor shopping and I had a much better understanding of what everybody was complaining about because I had been in a really lucky situation.
Rayanne: You’d been in a great relationship with your physician.
Amanda: Are there any questions that I’m not answering?
Rayanne: No, you have been fabulous. What’s your Twitter handle? We’re going to get to that later, but I want to Tweet out something right now.
Amanda: My Twitter handle is @LALupusLady.
Rayanne: Lupus Lady, perfect.
Amanda: On Twitter and you can also e-mail me at LALupusLady@gmail. And no spam please. But if you’re going to spam me, I’ll just give you hugs and smiles, which are contagious.
Rayanne: Look at you.
Rayanne: Look at you.
Amanda: But I would like to say, for Lupus Chat, we’re @Lupus_Chat. SO you can Tweet the Lupus Chat all the time.
Rayanne: Oh perfect, perfect.
Amanda: Even though the #LupusChat is every other Sunday for one hour.
Rayanne: But you can…So @Lupus_Chat, perfect.
Amanda: And also Tiffany Lupus, who you know, started and created it. And asked us to join together and work together like the power women.
Joe: That’s great. What do you hope to accomplish while you’re here for these couple of days?
Amanda: I like to be a little disruptive.
Joe: I love it.
Amanda: And I’ve gone to a few booths and, you know, and they’ve had patient engagement. And I say, “Oh hi, I’m a patient, engage me.”
Rayanne: Did they know what they were getting into when they invited Amanda to HIMSS 15?
Amanda: I think Regina knew.
Joe: That’s great.
Amanda: I think Regina had a little secret plan. But I’d just like to ask, you know, and if they’re designing new apps and new technologies. And at what point is the patient included in the process.
Rayanne: That’d be great.
Amanda: “Oh we have doctors on our consulting.” Where are the patient’s consulting? Are they consulting with you? And if you’re looking for somebody to engage with, I mean, I’m married, but I will, I’m available for engagement.
Rayanne: This one, she’s got it going on. She’s got it going on.
Amanda: I’m so nervous so thank you.
Joes: You’re doing great.
Rayanne: So app developers, anybody that’s looking to develop a medical app, please consider the patient. Not just the doctor, or the pharmacist.
Amanda: Lupus or not, the patients matter.
Rayanne: That’s right. It’s been a pleasure to have you here. Thank you so much. Can you give us, so we’ve got @Lupus_Chat, we’ve got #LupusChat, we’ve got @LALupusLady. Where else can we reach you?
Amanda: LALupusLady@gmail, and I like to use the #LupusStyle because with flare, I live with flare while avoiding a flare.
Rayanne: She’s got flare. What is that? What show is that? There’s a movie called, where it has all the flare in it. I can’t remember what it is.
Amanda: I don’t know. I would say I’m keeping glitter in my pocket because I don’t want to ruin your booth.
Rayanne: She’s got glitter in her pockets.
Amanda: Hey, you’ve got to spread Lupus Awareness like it’s glitter, it will stick everywhere.
Joe: I love it.
Amanda: I’ve been Lupus Lady for a while, so I’ve got my little tweetable things.
Rayanne: You’re great, you’re great.
Joe: Amanda, it’s been such a pleasure. Thank you so much.
Amanda: Thank you so much for having me. It’s been an honor to be a patient advocate scholar. And CTG has been a part of making this possible for us to share our voices. And that’s, that’s…now I’m getting out the tissue.
Rayanne: Well thank you. Getting out the tissue. Well thank you again to CTG for everything that they have done for the HIS take Scholarships. It’s such an important part of what we do here during this week that we’re at HIMSS. Right, it’s such an important part to continue to remember the patient.
Joe: Exactly. With that we’ll wrap up broadcast. Live from HIMSS 15. Again, Rayanne, a quick shout out to our sponsor CTG.
Rayanne: CTG Healthcare Solutions, been around for 49 years, in business 25 of those years focused on healthcare.
Joe: On behalf of our guest, Amanda Greene, my co-host Rayanne Thorne, I’m Joe Lavelle. And Intrepid Healthcare’s live coverage from HIMMS 15, we’ll be right back.