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.
Tami Rich – @HISTalk Patient Advocate Scholarship Winner
Tami 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 many topics.
We discuss the following with Tami on this episode:
- Tami’s Son’s diagnosis and journey over the last 20+ years
- Tami’s journey from finance in healthcare to Quality – “Not being a physician, our views were not considered authentic…” … How that drove her to listen to the voice of the patient.
- “Some people tease me and say I am the walking Triple Aim!”
- “It has to be that nothing about us is without us!”
- The most frustrating part of advocacy.
- “You get a pretty dark sense of humor when you spend 20,000 hours in hospitals!”
- Special Shout-Out to our mutual friends Collin Hung (@Colin_Hung) and Bernadette Keefe (@nxtstop1) for their efforts on #HCLDR
- In 21 years, her son has NEVER had a Care Plan!!!!
- And much more!
Follow Tami on Twitter!
Guest Bio About Tami
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 Thorne. 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: Sure thing Joe. More than 25 years of providing HIT consulting expertise and innovative solutions to produce real results. We have a results focused team, and value based solutions.
Joe: And a bunch of great guests. And we’re going to get right to it with our next guest, we’re going to re-introduce Tami Rich. Tami, again, is one of the five HIS Talking Patients Advocate Scholarship winners. Congratulations and welcome to our show Tami.
Tami: Thank you so much.
Joe: It’s so great to have you. Remind the audience about your background.
Tami: My son Jameson was born in 1993 and when he was almost three days old, a heart murmur was detected. And on that day we actually found out he had this very complex heart defects. So it led us on a fairly long journey with open heart surgeries, and lung illnesses, and other challenges. But I’m really excited to say that he’s now 21 and will be graduating in about five weeks from college. So his health has never been better.
Rayanne: That’s wonderful new, wonderful news. I have a child that was born very early, she was a preemie, only weighed two pounds. And so I understand that the fear, the hurt, the anger you feel with the healthcare system in your child isn’t getting what they need. You’ve become a patient advocate, direct results of the experience that you’ve had with your son Jameson. Can you tell us how that had impacted and changed your own personal life? Maybe how your family has shifted as a result.
Tami: Sure. Well I had the great good fortune growing up outside of Boston, going to college in Boston, and actually working in healthcare to make my way through college. And I even started as a nursing student, but that didn’t really work out too well.
And so I shifted to the finance and the business side. And worked in small hospitals and health plans. And then at about ten years into my career, I was working in a city hospital down in Quincy and I had the chance to lean quality improvement. Which was a brand new discipline. And I became a quality coach. And learned the tools to make improvements in healthcare, but not being a clinician, you see, our voices were not considered authentic. So I couldn’t work on clinical processes.
But we worked on organizational development, and culture change. And tried to listen to the voice of the patient to say, “It’s your hospital, what do you want things to look like?” And I got a business degree at night, and MBA focused on the organization development and entrepreneurship.
So when my son was born, the great irony was, now I had to understand from the bedside prospective and as a case manager, how to manager his care. And so, it’s been an incredible, sort of like the three parts of the diamond, or the triangle, to pick up that patient perspective that’s so rich. And I can understand how processes are supposed to improve, and the impact on cost.
So some people tease me and say, “I’m sort of the walking triple aim.” But son is always in the center and that’s kind of why I’m here today is because I think it has to be nothing about us without us. And the patient and family must be at the center of all decisions.
Rayanne: And unfortunately, clearly, they’re not. And so in an effort to really educate, not only the folks that are in attendance here, but those at home that might be listening, what has been the most frustrating part of this whole process. You probably didn’t even think of yourself as an advocate, but just as a mother trying to get the best care for your child, the best care possible. What has been the most frustrating thing you’ve experienced over the last 21 years?
Tami: That’s a really great question. I feel I have to say, I’m basically an optimistic person. You get a pretty dark sense of humor when you spend 20,000 hours in hospitals. And things go wrong and you, you know the phrase that kids use, my husband teases me and says stop overusing it, but we say, “Really? Really?” Like we’re supposed to be going for x-ray but then the lab person comes in, or “Gee you were supposed to have this test today, but we forgot to tell you not to eat.” And we just say, “Are you kidding?”
But in general, I feel extremely grateful that I could take ten years off from working, for example. And be by his side. So I don’t feel sometimes like I have a right to be angry, or frustrated, because I have this platform and this voice. But on the other hand, I think it’s the simplicity of the gap between us as humans is so small. But when someone starts to say, “I can’t have my data.” Or Regina’s story, when I first heard it, 73 cents a page for the medical record. Really? It’s our data.
And I think the saddest part for us is, my son’s had different things that should not have happened over the years. You can’t have four open heart surgeries, and a serious lung illness without having that happen. But if people just remember that when things go not according to plan, it’s like the rules of kindergarten apply. When you hurt someone, say you’re sorry. And it seems like it’s so hard to get s sorry out of somebody right. And also, learn from the mistakes.
And that’s the hardest thing, if there’s one area in particular that is, I’m proud to sit as a volunteer on the Boston Children’s Hospital Family Advisor Council and on the Patient Safety and Quality Committee, and on the Transition to Adult Care Committee. However, and I bring my time rather than doing other things with it. But sometimes I feel a token and that’s the thing that makes me feel the most angry, is to not feel really heard. Like they don’t really, sometimes people don’t really get it. And they want you do redesign the lobby again, or choose the menu again.
And it’s like, “Can I really do root cause analysis of when an error happens so it doesn’t happen to any other child because it was a simple medication switch?”
Rayanne: “And you want me to decide whether avocado green is going to be the right color carpet for the lobby?”
Tami: Or the artwork.
Joe: Of course it wouldn’t Rayanne. Let’s debate for three months with the most important decision makers at the hospital.
Rayanne: That’s right. You said earlier, and I want to come back to this, but you said earlier that ten years off, you were lucky to be able to do that. But what you have achieved with that, is discovering a voice right? For other people that can’t take ten years off. You’ve very lucky to be able to do that, and you recognize that. And so how you’re giving back, Tami, and you need to recognize the power that you have, that you wheeled, that…no thank you, don’t thank me, I’m going to thank you because it is incredible that you have chosen this as part of your journey.
And so part of the recognition of that is you are here. You are at HIMSS 15. You applied for a scholarship, you won the scholarship. So what are you going to take from this? What are you going to go back home, right? And the message that you’re going to take back?
Tami: Well I think that some cool things have happened in my life over the past few months. So I was asked to an event at Boston Children’s in October called a hack-a-thon to innovate new solutions. And it was really just meant for nurses and doctors and staff. They asked me to come as a mom and sit on the panel the night before at the kick-off and at this cool building at MIT. And talk about my pinpoints. And then people heard me talk about medication reconciliation, and discharge, and all the problems that were we sort of feel like, as patients, “It’s our first rodeo, it’s not yours. How come you can’t navigate?” I’m not talking about way finding, I’m talking about the path.
My son’s surgery could have been mapped out. He’s going to have three stages, it’s going to be eight years apart…but that never happened. So people said, “You should pitch.” So I pitched. And my team won. And then they didn’t know what to do with me because I’m not an employee. But that’s a good thing, that’s a good thing.
And now I’ve been a mentor at four of their hack-a-thons in Boston since. And I’m entering another competition and so social media was a natural thing that I didn’t have any real, deep exposure to, or finitely with. I mean I was in LinkedIn and Facebook, but not are Boston Heart Mom. And when somebody helped me come up with that handle, it’s changed my whole life.
Because now I’ve met people like Regina Holliday, and see her pain, and heard her presentations. And she’s one of the reasons why I’m so grateful to be here and have that scholarship. But I feel, like, this obligation to reach back, to pay it forward for others that can’t be here. To make the navigation better.
But also to hold a hand to my sisters, whether it’s Carly, and Melanie, and Amanda, or others that are stuck in the hospital room right now stressed out, thinking there’s got to be a better way. And I can say, “Go get a shower in this room, you won’t be locked out.” But it’s bigger than that. It’s not just behind the scenes in the hospital, it’s in the whole journey.
Rayanne: So @BostonHeartMom, that’s your Twitter handle.
Tami: That’s right.
Rayanne: And we’re talking to Tami Rich. It’s so great to talk to you. I want to talk about Boston for a moment.
Joe: Love it.
Rayanne: What is it about Boston? Boston strong, the whole country gained strength from watching Boston over the last 230 years right. I mean, what is it?
Tami: So I grew up just about a half a mile off the Boston Marathon in Framingham. And my dad was a Boston sports writer. So we used to walk up, even when I was really little, to wave to dad on the press box. And raised my son going to the marathon. And after the horrible events, and you may know that the trial, which is all over our TVs just finished. But I have a t-shirt that says, “There’s a little bit of Boston in all of us.” And on the back of it is a pair of running sneakers with angel wings. And the definition of the world perseverance. And I feel like it’s a metaphor for us, whether you’re a heart mom, or a spouse, not matter who, or whether our sons, whether we need healthcare, you have to persevere in this life and in healthcare.
And so I think there is something about Boston that, through our trials and tribulations, the whole world just sort of like, different than the French phrase, but I am Boston Strong. I mean everybody just felt that same thing that we felt that. We may drop our “R” when we “Pak our cas” but we have a huge heart and we’re very welcoming and we’re very warm. And we have sisterhood and brotherhood with everyone.
Joe: When you get a lot of practice Tami, I lived up there for six years. And those were probably the six worst winters from 2004-2010 in Boston. And you get an exercise in perseverance every year. And I love Boston, I love the city. I love everything about it.
Rayanne: I love it too.
Joe: Except the snowfall the first week of April.
Tami: Yeah I have a video of my husband. I had to have him go out of the window to dig out the vent. And he came back in on the video saying, “That’s it, the for sale sign’s going up. We’re moving to California.” So even we’ve had it.
Rayanne: Well there’s plenty of room in California. My favorite city, until I visited Boston, was Chicago. And the minute I got off the plane and walked down a street, a cobblestone street in Boston, it was just, my heart was there. And I think it has everything to do with the history that’s there. It’s the strength, the perseverance, the opportunity to be a community. They are a true community and they’re representative of the whole country.
And I know the incident at the Boston Marathon impacted the city greatly, but I hope that Boston knows how greatly it impacted the country.
Rayanne: Anything else that you want to achieve while you are here in this beautiful city of Chicago?
Tami: Oh, I’ve met such amazing people. I spend a lot of time on Tuesday nights on the Healthcare Leader Twit Chat.
Tami: Thank you, that is going on tonight that I might be a part of. And I just think that this opportunity to invite patients and families to every single conversation about healthcare, nothing about us without us, that’s my mantra and my message. And I just want to keep sharing that. And keep paying to forward as best as I can.
Joe: Tami, you gave a mention the Healthcare Leader Twit Chat happens on Tuesday nights, it’s HCLDR. Collin Hung and Bernadette Keefe do a great job leading that. Anyone who hasn’t participated in a Twit Chat, what a great way to learn.
Rayanne: Fast and furious.
Joe: I do five or six a month, and they take an hour each time. I mean it’s a tremendous commitment. I work late so I can make the time to do it. But I learn more in those five hours than I used to learn in a month. So it’s a really good way to keep up on what’s happening out there on new technology, new process. So anyways, sorry to interrupt with a commercial for the HCLDR Twit Chat, but they do a great job.
Rayanne: You mentioned quality improvement, so before we say goodbye, I want to touch on this. I started recruiting in healthcare back in 2001. And that was probably one of the number one recruitments we did. Director of QI, or a Director of QM. Language has shifted, right, you don’t hear so much about quality improvement, we’re talking about interoperability now. You know, we talk about big data. But that is still a huge need within an organization. So how do you think HIMSS and be a contributor to that quality improvement, that quality management within healthcare?
Tami: I think that’s another amazing question, and it’s not as sort of tough a nut to crack as people may think. For me though, it’s much more deeply imbedded in safety. So patient safety and quality have to be, and are married together, so it’s not just fixing the easy, low hanging fruit, stuff of quality improvement, it’s keeping my son safe. Making sure that it’s his medication the right time, everything is done the right way. Let’s not just lean to tighten the process.
So I think with interoperability, and with the HIT challenges, it’s still the same mantra, nothing about us without us. If you want to keep us safe, you’ve got to be able to know that if you type in my sons’ diagnosis, you need to show it to me. Because guess what, I can’t tell you how many times things are incorrect, or dates are wrong, or they’ll say something like, “He’s in fontal failure.” Which used to make his cardiologist crazy.
The same language that used in the chart, like the open notes program out of Boston that’s now across the country, that’s genius. I mean that’s how we’re going to keep people safe. But that data has got to be able to come down to us in a user friendly way. So that we can comment on it. It’s our data, so don’t you think we should look at it to see if ti’s right.
Joe: Tami, sorry to interrupt. You know a lot of times it’s wrong.
Tami: Thank you. Yeah absolutely. And how can we make it right. And aren’t we all in this together?
Joe: I’m not saying that as an indictment, I’m saying that as, “If you show it to me, I can help fix it.”
Rayanne: “I can tell you it’s wrong. Why would you not think that I wouldn’t know about my own healthcare? Or what’s happened to me in the last ten years?”
Joe: Things happen, copy and paste, I mean, there’s all kinds of reasons.
Tami: It happens great in my practice. I’m at a practice that uses a system where the portal’s fantastic. And it’s my care plan for what’s next, but 21 years in the hospital with my son, I’ve never had a care plan. So I’ve never gotten anything electronic that says, “This is what’s happened, this is what’s next.” We have to change that.
Joe: Yes we do.
Rayanne: So great to have you here with us. Thank you so much for joining us. Congratulations on winning the scholarship. And for being a member of The Walking Gallery. Joe and I are so excited to be a part of this. I can’t wait to get home and get a jacket and ship it off and say, “This is what I want on mine. I want to be an advocate for this.” I want to be an advocate for The Walking Gallery. Just that, let’s get the message out about it and help spread the word about patient advocacy. So thank you for taking time out of your life, for sharing your story, for really just giving us you.
Joe: Thank you so much.
Tami: Thank you so much. I’ve been honored to be here, to be with you. Thank you so much for your support, for our scholarship support and I just can’t thank you enough. It’s been a pleasure.
Rayanne: Thank you Tami.
Joe: Pleasure’s all ours. That wraps this live broadcast from HIMSS 15. Again we want to shout-out a quick thanks to our sponsor CTG Health Solutions.
Rayanne: Population health, data, and analytics, IT support, electronic health record. We can cover it all here at CTG. You can reach out to us at CTGHS.
Joe: On behalf of our guest, Tami Rich, my co-hose Rayanne Throne, I’m Joe Lavelle and Intrepid Healthcare’s live coverage from Chicago will be right back.