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.
Regina Holliday – Founding Artist of The Walking Gallery
Regina joined us to discuss why she created The Walking Gallery and it’s mission, and also to tell us about how she and Tim at HISTalk came up with the idea for the HISTalk Patient Advocate Scholarships.
We discuss the following with Regina on this episode:
- What is The Walking Gallery and how did it come about?
- Why is she “super-aggravated” with CMS?
- EVERYONE MUST – Ask your providers for your medical records now!
- Which organizations get it with regard to Patient Advocacy?
- How can we help The Walking Gallery?
- The Walking Gallery’s big #Cinderblocks2 event coming up June 4-6.
Read here to donate and support scholarships to #Cinderblocks2!
Guest Bio Regina Holliday on Wikipedia
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 this 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 Talk HIT with CTG. With my friend and co-host Rayanne Throne from our remote studio right here in the CTG Health Solutions booth. Rayanne let’s give a quick shout-out to our sponsor CTG Health Solutions.
Rayanne: Why CTG? Well because experience matters. And that’s what we’re going to be talking about today. For the rest of this afternoon we’re going to be talking to folks that have experienced healthcare in a completely different way than the average person that’s walking on this floor.
Joe: Or maybe not.
Rayanne: Or maybe not.
Joe: Maybe we’re just trying to get a different word out. We’re do excited to be joined today by Regina Holliday, founding artist of The Walking Gallery. Regina, welcome to the show.
Regina: Thank you so much. I’m glad to be here.
Joe: Regina also worked with HIS Talk to select five HIS Talk Patient Advocate Scholarship winner that we’ll be interviewing later today. So Regina, thanks for putting that together. We couldn’t be more excited.
Regina: It was a pleasure.
Joe: Before we begin our discussion, tell the audience about your background and how you came to create The Walking Gallery.
Regina: Oh sure, so five years ago I lived in Washington DC and I was the clerk at a toy store, and I was a preschool art teacher, and I occasionally did neighborhood murals. And then my husband got cancer, he was diagnosed with cancer in March of 2009. We were hospitalized for 11 weeks in 5 facilities. And we could not get access to the electronic medical record. Which meant we couldn’t make good decisions in a timely fashion. My husband died on the 12th week and then I began to paint.
I began to paint a really large mural in Washington DC that became part of the healthcare reform debates and the high tech legislation debates. And I testified before sub-committees of congress, went to every federal meeting I could to. And then it got winter and I couldn’t paint outside anymore. And a wonderful friend named Jen McCabe on Twitter suggested I paint on the back of jackets. Because she was going to an American Medical Association meeting and no patients were invited. And she said, “If you paint a jacket picture of your story, and that of your husband, it will get into that room.” And so I did that, and then a couple other people saw it and wanted jacket paintings. And again, I painted my story on their backs.
And then in 2011, Kaiser-Permanente opened The Center for Total Health, which is an educational experience with smart walls. And my friend, Dr. Ted Aton, with Kaiser, and I walked into the room, I said, “This space is gorgeous. We should have a gallery show here.” And he said, “Regina, these are smart walls, you can’t put paintings on smart walls.” I said, “No, no, no. The paintings aren’t going to be on the walls, they’re going to be on the people’s backs. We’re going to tell our patient’s story and we’re all going to be the docent of our own lives.” And he’s like, “That’s brilliant.”
So he went to Kaiser-Permanente and said, “Can we make this happen.” And it took a month for National Kaiser-Permanente to approve the idea. SO we had one month to paint 56 jackets.
Regina: So I and some other artist did that. And the first Walking Gallery gathered in 2011 on June 2nd in Washington DC.
Rayanne: You’ve been busy.
Regina: Yes. Now 380 jackets are in the gallery. I’ve painted 330 of them. And we are growing, and growing, and growing. But every jacket is unique to the walker, and it tells their story.
Rayanne: That’s wonderful. And Joe and are going to be e-mail over the next week. Definitely need to get our own jackets, we want to be a part of The Walking Gallery.
Rayanne: Thank you for contributing a talent in an unusual, unique way.
Regina: Yes, and a lot of people don’t realize, this is really, truly open to everyone. For instance, Farzad when he was the National Coordinator of Health Information and Technology, he thought he couldn’t join the movement. And I’m like, “I designed the movement specifically so you could join it.”
We do not charge for the painting. You give us your jacket, we tell your story. This is a sacred agreement between the two of us, there’s no money exchanged. This is open to all, anyone is welcome to be part of it. We’re on Facebook, LinkedIn, and Twitter. The entire concept of this is everyone has a story, and everyone should tell it.
And so doing this, I have the concierge of my old apartment building, she’s in The Walking Gallery, and Todd Park is in The Walking Gallery. And that’s the kind of range that you’ll see within The Walking Gallery.
Rayanne: Have you already been painting? Because as I look at your hands while you’re talking, I see some paint on your hands.
Regina: Yes. You’ll get to hear from Carly very shortly. She’s one of the HIS Talking Gallery Scholars. And I just finished her jacket “My Medicine.” Which is her journey.
Joe: Tell us about the HIS Talking Scholarship. How’d you come up with it?
Regina: Isn’t that the best?
Rayanne: It is the best.
Regina: Okay, so, I’m sort of getting famous for being homeless at HIMSS because HIMSS invites me to come here, but then they don’t pay for it. So I beg for things. And so I was doing an interview with Tim, I was venting about this whole thing. About how hard, and how expensive it is for me to try and come to HIMSS. Because I’m not only having to find lodging and travel, and a place to stay. But also, I have to pay for a babysitter and it gets expensive. And I said, “And there’s patients who would like to come here. But there’s now money.”
And so he just did an off-hand comment, “Wouldn’t it be nice if we created a scholarship?” And so this past winter I went back to him and I was like, “Okay, you said it in that interview. Let’s actually do it.” And so Lori and the whole team though, “Let’s make this happen.” So they agreed to $1,000 per person to cover travel and lodging. That was the hope. Now things are expensive right.
Rayanne: They are.
Regina: So CTG, they stepped in too and helped with the hotel. It was beautiful watching all these companies come together, making it possible for five patients to come to HIMSS. And these folks have been going, even though they have active disease states, they have been going booth to booth and talking to vendors about the true patient experience.
Rayanne: I’m speechless.
Joe: I’m speechless too.
Rayanne: I’m speechless. There’s just so much information that you can generate from this, I want to say little effort. It’s not a little effort, it is a huge effort, but it’s a little…
Joe: It’s a little effort that’s huge.
Rayanne: It’s scaled well.
Joe: Yes, absolutely.
Regina: Right, right.
Joe: There should be a hundred scholarships next year.
Regina: I would love that if that happened. I mean, I’m watching people come to the HIS Talking booth, and they keep saying, “I’m your favorite, I love you. I’m your best fan. I think you’re the best.” I mean like vendor company, after vendor company, after vendor company, all day long.
Rayanne: Tell them to write a check when they tell you that, you know. Let your money do the talking.
Regina: So I’m very hopeful that going into the next year we’re going to see even more change, even more acceptance. And that’s one of the reasons right now, me and a whole bunch of people are going to see a mass. We’re doing public comment, we’re doing a national independence day for health data because we think it’s really important for patients to get their records. And there’s institutions and organizations in this country that do not think that is the case.
The patients are not interested and don’t want that information. And we’re going to prove them wrong.
Rayanne: Yes, you are going to prove them wrong. And it’s, as a patient, I’m a patient, I’m not a provider of care. I am a patient myself. I want access to my information and I need it. I’m somebody who’s had multiple surgeries, I have severe asthma as a child. It’s cleared up over the years, but if I were all of a sudden out of the medicine that keeps me healthy for the last ten years, I would be in big trouble.
Regina: Yes you would.
Rayanne: And how would my current physician know that, because he’s never treated me for severe asthma.
Regina: So like now you’re in Chicago, where do you live?
Rayanne: Southern California.
Regina: Okay, so you go to the hospital right now. How do they get to your medical records?
Rayanne: They don’t.
Regina: Because it’s not interoperable yet and it’s not following the patient. And you don’t have a card that gets you right on board.
Rayanne: That’s right.
Regina: And that needs to change. That has to change. We have to have national data access. We have to have it at any point. Because you know what, Americans, we move around, we love our nation, and we go all over it.
Rayanne: That’s exactly right.
Regina: So universal healthcare to the extent that everyone has to be able to access their records anywhere.
Rayanne: Anywhere, anytime.
Regina: And they see their entire record at any time.
Joe: It’s a big job. And I will say, ePatient Dave was here yesterday. He was very careful to say, “You can’t yell at your doctor. Your doctor is trying to do the best they can do.” We’ve all got to get behind this message and yell loud, it’s all the things that happen in between. There’s not just one switch we can turn. We’ve got to make the systems interoperable. We’ve got to make the data clean and consistent. We’ve got to make people motivated to make sure if it’s wrong that it can get fix quickly.
Regina: Right, we need to roll it out fast because you want to fail fast. You know, get the data out, get it out dirty and let’s clean it up. But there’s a whole bunch of people like, “Oh we’ve got to make it pretty and perfect before we actually give it out to people.”
And that’s what led us to now. We were so far, every other industry, when it comes to utilization technology.
Rayanne: And we can follow Steve Jobs and that path. You know, he was all about failing fast. Get it out there, fail fast, start over again. Learn what you can from where your failure lied, and them move forward.
Joe: Well and I think one of the arguments is, you hear this from lawyers, I’ve been involved in HIEs, “Well you know, what if my sister sees my daughters records?” And you know what, if your daughter passed away, you wouldn’t care.
Rayanne: No you wouldn’t care.
Regina: Well this is the thing too, a lot of people forget that you have the right to reveal. So I used to be a Kaiser-Permanente client. And I signed a massive HIPAA statement that stated, “Talk about me on the national stage if you work for Kaiser-Permanente.” That was like everyone who works for Kaiser-Permanente. Because I have that right. But a lot of people don’t even realize, you have the right to share, you have the right to make all the stuff public. Let’s respect that too.
Rayanne: Do you think that technology is aiding this, or is it somehow slowing it down?
Regina: Technology accurately applied is actually aiding it. The problem that we’re running into is there’s a whole bunch of people who are pushing back on these changes. You know, they’re leadership positions often times themselves, very uncomfortable with technology. So they’re frightened in applying it.
And we have this young base that’s coming up that they don’t want a phone call, they want a text. There’s a massive disconnect between the reality of the everyday.
Rayanne: They were born with this in their hand right. And this is how, we’ve talked to a couple of gust about this. The way we communicate personally has changed drastically in the last five years. Why would it not impact how we communicate through our business, and through our healthcare?
Regina: Right. I went to a hospital just a couple of weeks ago to help a friend who was in an emergency situation. And they entire emergency room had signs up that said, “Do not take out your cell phone, it’s not allowed in our emergency room.” And I went up to a nurse and I said, “This is unacceptable.”
Rayanne: Yeah, welcome to 2015.
Regina: Right. So it’s still happening nationwide.
Rayanne: When somebody has told me that, or I’ve seen a sign, I said, “As soon as I see a doctor not holding a mobile device in his hand and not texting or talking on it, then I’ll put mine away.”
Regina: Well she said, “The reason we have the signs up is because the doctor’s time is precise. And when he comes in that room, he doesn’t want to see a cell phone.”
Rayanne: But the patient’s time isn’t precise, yeah.
Joe: Oh, you’re stepping on my biggest nerve. The healthcare system today is designed around the doctor.
Rayanne: Not around the patient.
Regina: Not around the patient. I’m like, “My friend was in that hospital room for 2 hours and 15 minutes, that was beside her. And in that 2 hours and 15 minutes, we had a doctor in there for 3 of them, 3 minutes. And if I had obeyed those signs, we wouldn’t have been able to access our friends, or have any support during that entire time.”
Rayanne: You’d have been looking at the wall and reading a magazine that was six months outdated.
Regina: There’s no magazines, there’s just the wall.
Rayanne: And some cheery eagle soaring, and a message under that eagle about “keep flying.”
Joe: So you talked about inoperability, what other priorities should these companies, all these people spending hundreds of thousands of dollars to be here, focusing on this year?
Regina: We need to be sharing data. I mean, it’s like the learning health systems that are working together right now. Like the Tanner Foundation is working on…or say you don’t want to share with absolutely everyone, but share with a hundred of your best friends, and include patients in that. You’ve got to get large data networks available and have us be part of that conversation.
This is how Visa card took over. This is chaotic development. It works, it’s amazing, and it changes the society.
Rayanne: Are you ever tired of painting?
Regina: No. I’m getting better and better at painting, and faster. Which is really good because I have a lot of paintings to do.
Joe: Are there any good example that someone here could go and you’d point them to and say, “Make sure you check out this while you’re here.”
Regina: Can you reframe that? In what way?
Joe: Somebody that’s headed in the right direction. A vendor.
Regina: Oh a vendor company that’s doing amazing stuff?
Joe: Interoperability showcase.
Regina: Okay well the State of Indiana of course, they’re doing great stuff. You know, No More Clipboard? They’ve done a lot of stuff that’s pretty interesting. My Lifetime Health Diary that was originally out of New Zealand, and then went to Arizona, I love them. Have you ever seen them?
Regina: Okay, they’re the only EHR platform that I have ever seen that has a lifetime timeline that is, when you first open it, you see the life of the patient. You see all major clinical events, and life events. So like for instance, this man’s wife died in 2007, and anti-depressant meds start one month later. All that’s there.
So you see the life of a person. And not just in a medical state, but on top of that, they have a wonderful, simple, anatomic drawing of the human body with highlights spots of every point of concern. And that’s one the face page.
Rayanne: That’s wonderful isn’t it? This is how we teach children.
Regina: Right. Why aren’t we doing this? But you see, the problem was a whole bunch of EMR companies, and EHR companies, they came from trying to convert a paper chart, and they made online paper charts, that’s what they did. And they don’t’ realize, we are in a totally different world of technology. You can make that screen do whatever you want to do.
Rayanne: You can make it anything that you want it.
Regina: Right, and it can be visual.
Rayanne: And that’s part of the mission of The Walking Gallery, is to create this visual focus that has impact on how we start thinking about patients and their lives. And the lives of those around them.
Regina: Yes, indeed.
Joe: Is this the biggest conference you attend?
Regina: No. I went to the Ophthalmology International Conference, that had over a hundred thousand attendees.
Joe: Holly moly.
Joe: Where did they do that?
Regina: They did that here. So this one only has 40,000. But you know, I did Toy Fair for years. Toy Fair at the Javits Center. That’s a gigantic conference. And then when it comes to speaking, the largest speaking engagement I ever had was Sharp Healthcare. Sharp, the Sharp Experience, it’s amazing. What they do at Sharp is they do three sessions of 5,000 attendees and that is every single employee of the entire institutional chain, everyone. The janitors, the cafeteria workers, the nurses, the doctors. And they bus them in. They have shifts of buses that come in so that every single person who works at the institution can be a part of this experience.
Rayanne: They can leave a shift at the hospital and come in.
Regina: Yeah that’s why it takes two days to finish it.
Rayanne: That’s wonderful.
Regina: Isn’t it?
Rayanne: And that’s in Southern California correct?
Regina: Yep, Sharp Healthcare.
Rayanne: So San Diego? Perfect.
Regina: I was just like, everyone should do this.
Rayanne: Do they do that every year?
Regina: Yeah. They call it The Sharp Experience.
Rayanne: That’s wonderful.
Regina: It’s amazing.
Rayanne: I’m going to crash that party, I live in Southern Cal so.
Regina: You should totally go. I mean it’s a spectacular event. And it gets everybody on the same page. Because that’s missing in so many institutions. Maybe you bring you CMIO and your CEO to an event, but then you leave all your front line staff.
Rayanne: That’s right.
Regina: And they have no idea about the mission.
Rayanne: The ones who could have the best experience at an event like that. And actually have an impact on patient care.
Regina: And then of course, you invite the patients too.
Rayanne: There you go. Regina, are you running for President?
Rayanne: We need you in office.
Regina: Congress is in the future.
Rayanne: We need you in office. We really do. Thank you so much for turning a personal tragedy into a life mission that has had such beautiful impact on everybody. On patient care, on ultimately it will have an impact on patient engagement. The true definition of meaningful use. I mean, there’s all these different things that we can look up when we do a Google search on meaningful use, but this is a meaningful use of art, of a message, of a story.
Joe: You’ve inspired us.
Rayanne: I am so inspired.
Regina: I think you’re going to love doing The Walking Gallery.
Rayanne: I can’t wait to wear my jacket. I’m going to wear it to every event I got to.
Joe: It will become my profile picture.
Rayanne: It will, me too, me too.
Regina: Well during our annual gathering, we’re going to have an annual gathering in Grantsville, Maryland this summer, on June 4-6. We call it Burning Man Meets Healthcare. They’ll be fire dancers, and doctors, and nurses, it’s going to be epic. Sort of a small Woodstock feel.
Rayanne: I love that, small Woodstock. So you’ve already walked around this giant, this one part of the expo hall. You’ve probably been in the north expo hall, probably attended some sessions. Have you led a session here?
Regina: I’m an exhibitor, so I’m in the exhibition hall.
Rayanne: So are you just walking and talking?
Regina: Well and being in the HIS Talking booth.
Rayanne: Okay, and what else do you hope to achieve while you’re here? Is there a personal quest you have while you’re here?
Regina: You know, Farzad, and Peter, and Dave, and I, and a whole bunch of people who are super aggravated at CMS, we’re beginning the path of public comment period, we’ve got to change the order petition up. We are going to have a demand for data access on July 4. And we decided on all of that here at HIMSS.
Rayanne: So you mentioned earlier about Daycare. You have a family.
Regina: I have two young children yes.
Rayanne: And where are they?
Regina: In Grantsville, Maryland with my babysitter. So she’s a lovely woman, her name is Ms. Susan Thatcher. She has a Master degree in psychology so she’s like the best babysitter ever.
Rayanne: That is the best babysitter. Well I hope they understand the legacy that their mother and father have created.
Regina: Well they’re a part of The Walking Gallery, so they’re a part of that legacy.
Rayanne: Great, that’s a great legacy. And we are so lucky, blessed, fortunate, to have you sitting at our table sharing your story, talking a little bit more about what we can do, what the public can do. To that end, what can the public do? What can our listening audience do to benefit you, to help out The Walking Gallery? How can we get the message out there to more people?
Regina: Okay, so there’s two things to this. Everybody needs to ask for their medical records electronically from whatever providers they have. That would be wonderful if everyone did that nationwide and prove that we as patients, are activated and interested in our care.
Rayanne: And empowered.
Regina: Yes, indeed. And as far as joining The Walking Gallery, anybody’s welcome. You can reach out to me on Twitter, Facebook, LinkedIn. I’m Regina Holliday, absolutely everywhere. You can say that you want to join The Walking Gallery.
Rayanne: Two “L” in Holliday.
Regina: Yes, two “L” in Holliday. The Wikipedia entry got it right. And I would love to mentor you through that process.
Rayanne: Regina, thank you so much. Really we cannot thank you enough for taking some time out of your very busy schedule and your mission. We are advocates of Regina Holliday.
Regina: I’m advocates of you.
Joe: Whatever we can do for you.
Rayanne: Please follow Regina @ReginaHolliday on Twitter, and you can find her every place else. Just do a Google search, you’ll find anything you need to know about Regina. Thanks again.
Regina: Thank you.
Joe: All right, that wraps this live broadcast from HIMSS 15. Again we want a quick shout of thanks to our sponsor, CTG Health Solution.
Rayanne: Because experience matters, CTG Health Solutions has over 25 years of providing HIT consulting services, and solutions as well as improving healthcare outcomes.
Joe: On behalf of our guest, Regina Holliday, and my co-host Rayanne Thorne, I’m Joe Lavelle. And Intrepid Healthcare’s live coverage from Chicago will be right back.