Healthcare Data and Patient Care

The transition away from traditional fee-for-service models of healthcare to a value-based care model has turned the world of healthcare data on its head. Find out how our view of healthcare data is changing – and why we need to put the patient first in all data and IT initiatives.

Laura Adams is the Founding President and CEO of the Rhode Island Quality Institute – – which is a center of collaborative innovation in healthcare. Health Data Management named her to their 2018 Most Powerful Women in Health IT in the Thought Leader category. In addition, she is currently co-chairing the National Academy of Medicine’s Health Data Trust Initiative Steering Committee and serves on the Oversight Council for the Massachusetts Center for Healthcare Information and Analysis.

In our chat, we discuss:

  • How we view healthcare data – and why we need to expand our perspective.
  • The transition to value-based care – and why health systems now have to use data differently.
  • “Patient first” healthcare data– and how Rhode Island is leading the way.

This is an episode of the Leading with Health podcast, formerly titled “Healthcare Lead Generation.” In this podcast, healthcare IT disruptors, innovative healthcare providers and health sector company leaders join host Jennifer Michelle to discuss growth strategies and navigating change.

Jennifer Michelle, MPH, EMT is a marketing consultant specializing in the healthcare sector. President of Michelle Marketing Strategies, she has a Master’s in International Health & Epidemiology and currently volunteers as an EMT. Her unique background allows her to bring unexpected insight and depth to every interview.

Healthcare Data & Patient Care (Podcast Transcript)

Jennifer: 00:02 Hi, everyone! I’m Jennifer with Michelle Marketing Strategies where I specialize in helping healthcare IT and provider organizations get more leads. Today on the Healthcare Lead Generation podcast, we’re talking with Laura Adams of the Rhode Island Quality Institute. You can find them Laura Adams is the Founding President and CEO of the Rhode Island Quality Institute. It’s a center of collaborative innovation in healthcare. Health Data Management just named her to their 2018 Most Powerful Women in Health IT list in the Thought Leader category and she’s currently co-chairing the National Academy of Medicine’s Health Data Trust Initiative Steering Committee. Plus, she serves on the Oversight Council for the Massachusetts Center for Healthcare Information and Analysis. So we are going to learn a lot about data and quality today. Laura, welcome! It’s such a pleasure to have you on the podcast.

Laura: 00:57 Thanks so much, Jennifer. It’s great to be here.

Jennifer: 00:59 Awesome. So I think what I was hoping we’d start with first is talking about how people view data in healthcare. Because I think you’ve been really working to help change how people view data and how they work with data, but let’s start with where we are now. What is going on with how the healthcare system currently views data?

Laura: 01:20 Healthcare got off to a slow start in data sharing. We think of us being one of the last industries to really adopt information technology, to get our information digitized. I was struck by the Economist magazine once, ranking healthcare second only to mining for lack of investment in information technology. Now we in health care love technology, we can look in every molecule of your body. We just couldn’t get your lab tests across the street even if you’re dependent on it. Some of the overarching issues associated with that, there were certainly privacy and security concerns. We hadn’t set up that framework for protecting patient data. But maybe more than that, we had a tendency to see data as power and something to be guarded. Primarily as a competitive advantage. That was what concerned me the most in watching the origins of data sharing beginning to emerge in this country was how guarded people were around sharing it because they were afraid they were giving away an advantage in the marketplace.

Laura: 02:20 But another really important aspect of this was that we saw it through the eyes of the patient and family. I remember one time an insurance company advertising a bag that they were giving – actually a paper bag with the company’s logo on it – designed for people to carry around mom’s meds in a bag from doctor to doctor. So each doctor would know what the patient is on and it just struck me that we can get money from any street corner in the world on our ATMs but we were carrying medications around in a paper bag. It was absolutely astonishing.

Jennifer: 02:56 Yeah. That is astonishing. And it’s good if you get that. You know, I work as an EMT and we’re always trying to figure out what medicines people are on. And it’s usually just grab everything off the counter that you can find and bring it in. So I see that. Let’s back up a second to what you were talking about – competitive advantage. I always think of the whole EHR situation where it was great to think everything will be electronic, but it wasn’t really conceived of by people who understood where technology was going or how it would be used. It was more conceived up from a sense of who can be the first to set this up. And it was set up in a very siloed manner. So it wasn’t cloud based, it wasn’t shareable, it didn’t follow the patient around. Is that kind of what you’re talking about when you talk about competitive advantage?

Laura: 03:45 I’m thinking more along the lines of people were afraid that if they gave up their data, one of their competitors in the marketplace might have a leg up on them. So we had our eyes opened in Rhode Island, big time, when a physician shared a circumstance where one of his patients had experienced a significant chest pain. He had a history of a heart attack so he went straight into the nearest hospital, which wasn’t his usual hospital and they had no data on him. This was before we began exchanging data here. With a history of heart attack, these doctors had no other information on this patient and so they did the right thing by looking at an electrocardiogram and EKG and they looked at it and said, gee, this looks like he’s having a heart attack – and gave him a big clot buster drug. Well, it opened up a brain bleed in that patient’s head and that patient spent the next few days fighting for his life in an ICU and the next few months fighting to regain his motor skills and his cognitive abilities.

Laura: 04:42 The saddest part of that story was that this patient was not having a heart attack and had they had the EKG from his primary care doctor in the vicinity, or a specialist across the street, they could have compared it and seen, hey, this is not a heart attack. This tracing has looked this way for awhile. Let’s look deeper. That patient had pancreatitis and it was almost lethal to give him that drug in the presence of pancreatitis. So we began sharing that story and others like it around Rhode Island in the beginning to start to keep the patient at the North Star of this initiative. To say we really can’t withhold the data in good conscience. It’s not what we’re about.

Jennifer: 05:22 No. And, and once you had that story – it’s such a clear example – do you find that people were more quick to get on board with that?

Laura: 05:31 I think they were and we had other mechanisms in place. For example, our board meetings are open to the public and not a lot of organizations’ board meetings allow people to come in and listen in on them. Now I think people in Rhode Island would have made the right ethical decisions anyway, but it really helped to have our behavior public. To be having the walls lined with people who would listen to us talking about whether or not we were willing to share data in the best interest of patient safety and the highest quality of care. It made us take that ethical high road I think we would have anyway, but it certainly insured it. So we had other aspects like that that drove us in that right direction, but we did keep talking about the patient story, which had a huge impact on people’s desire to share the data.

Jennifer: 06:20 Well, it’s interesting because I’ve heard some conversations like what you’re discussing. But honestly it sounds like you guys are far ahead of the curve of the rest of the country in this. Am I not seeing that correctly? It sounds like you guys really jumped on this early and a lot of places are playing catch up right now.

Laura: 06:37 We did because we were fortunate enough that the Institute had been formed many years before the Affordable Care Act and the high tech grants came out. Now by the time they came out in 2009, 2010, we had already been in existence for a good decade. So I saw a lot of states. Every state got money to stand up one of these health information exchanges, but I think that the lack of recognition of the need for social capital before you got financial capital was extremely important. So we already had a trust framework in place. We already had our vision of this. We already had this North Star of the patient drawing us in this direction. We were already the birthplace, for example, of Surescripts, where we did the beta testing of that. All of that was in place and then the financial windfall was realized for us. So we had that social capital long before we got financial capital. I think if you are unfortunate enough to get a big blast of financial capital before you had that social commitment, that commitment to the bigger vision, then it got looked upon as an IT project that would simply be executed and, of course, people would share data and, of course, they would do these things. Well, they didn’t, they just didn’t because those discussions had not taken place.

Jennifer: 07:57 And they probably didn’t even think about it because it was being presented as an IT project from the beginning, as opposed to something that was really what was needed for quality.

Laura: 08:07 Correct. And once it was seen that way, they went about spending their money immediately on securing a vendor, building the infrastructure. And then they turn to their constituents and their data sharing partners, potential data sharing partners, and said, okay, we’re ready now. And they said, well, we never said we were willing.

Jennifer: 08:26 Wow, I bet. Wow. Okay. I’ve got to ask you one more question, which is, are you finding people are becoming more open to sharing of data or to following your lead or to taking the approaches that you’re talking about?

Laura: 08:49 I think there is very much a strong commitment to sharing data. What’s become clear to a lot of people who are now operating under new payment models is that if you don’t have the data, when a patient steps outside of your network, steps outside of your healthcare system, your ACO, you are truly at a competitive disadvantage if you don’t share the data. So those that worried that they would be at a competitive disadvantage if they shared the data are now realizing they need that quid pro quo from the rest of the community. They need that data to be shared back with them. Because if you’re at risk for a patient population, you need to know where they go. What tests have been done, what treatments they’ve had. You need to know what’s happening if you’re responsible for the total cost and the total quality of the experience of that particular patient.

Laura: 09:37 So I’m feeling that that tide is definitely turning and data sharing is becoming easier. The EHRs have come together in many ways. You can share data point to point. I don’t think the complete solution is sharing data point to point because that lets you know about a particular episode in time. We do persist the data here, meaning that the data that we’ve brought in now for a decade, we’ve been collecting and storing that data. So a physician who spoke most eloquently to me about this said, you’ve got to begin sifting and serving that data up to us. Meaning, you’ve got this wealth of information about this patient’s history. But he said, Laura, when a patient’s in front of me, I’m looking for a needle in a haystack and you keep adding more hay. Because they serve it up. So our new direction is not so much just the sharing of the data but calling it out, making it actionable and serving it directly into their workflow.

Jennifer: 10:39 Okay. So making it actionable directly to the providers?

Laura: 10:42 Correct. They don’t go into the database and try to swim around and makes sense out of the data. We serve up what they asked for into their own, for example, Epic tracker board with just an icon. They’re saying there’s data that you asked to see if it was present in our health information exchange – and it’s present. So click here.

Jennifer: 11:00 Okay. Wow. Well that makes more sense because that’s what they’re actually going to need. I just think, 15 years ago, having any data was such a big issue. I don’t think anybody foresaw what it would be like when we were swimming in data. So I can see how that became an issue. Nobody could understand the amount of data we would have. So now I want to take a bit of a right hand turn here and talk about something going on obviously across the US health system right now, which is the talk about a transition to value-based care. And for a lot of legislative and political reasons in the last couple years, which I will not get into here, there’s some confusion about where we’re going. Where do you think we are now in that?

Laura: 11:44 I think that the transition has been painfully slow, but I once thought of it as almost a silver bullet. As many years as I spent working on quality improvement, it was always clear to me that our current fee-for-service model, we were the only industry in this nation that could inflict a defect on our customer and bill them to fix it.

Jennifer: 12:08 And I think many a patient has felt like I can’t return anything. I can’t complain. I mean, I guess I can talk to Walmart better about a defective wastebasket than I can about not getting the treatment I wanted from my PCP.

Laura: 12:23 That’s exactly right. And I got infected in your institution and I had to pay you to fix my infection. I’ve worked with amazing caregivers. There’s nobody., we never got up and said, I think I’ll be greedy, avaricious or evil today and I don’t care who I harm or how much money. Nobody ever says that, but bad systems do bring out the worst in people. I remember when I was leading hospitals in the South and I would come in every day and I was buoyant if I had lots of heads in beds. And one day I remember being particularly excited. I raced into a leadership meeting and said, people, I’m so excited! I heard it was going to be a bad flu season and we will so make budget this year. And I had to stop and take a deep breath and say, what the heck happened to me? I did not get into this to do that. And I started to realize that I had become adaptive. I was adapting to this payment model where the sicker that people were, the better we did financially, not the opposite.

Laura: 13:27 This transition has been very difficult, to turn this healthcare barge around. There are a lot of people that profit off of it the way that it is. And there are a lot of people that would like to make the transition, but there are infrastructure investments, there’s a cultural change that has to take place and there’s almost a generational turnover that needs to happen so that we see healthcare as a continuous healing relationship and not a single transaction, one transaction at a time.

Jennifer: 13:55 I like that. And I think you’re right because you see it again and again with people. If the system makes it not only easy to look at something in a certain way, such as fee-for-service, but also constantly reinforces it, it’s just what you’re going to think of. I mean, you’re going to learn how to work that system. It’s just how it’s going to be. So let me talk to you about technology regarding that. I mean, one, do you think we’re still on that path to value-based care? And if we are, where does it fit into that? Where does technology fit into that?

Laura: 14:29 I do see it, and as we become more clear about our responsibilities to care for the patients beyond the walls of our institutions and organizations, the more we understand that we will not make money off of that congestive heart failure patient repeatedly returning. We will begin to understand what triggers that patient. We’ll start to put things – as as we are now, and this is becoming more and more prevalent – for example, a mat that an elderly patient steps on in the morning and that – not not every congestive heart failure patient, just the ones at risk for repeated hospitalizations – that weight is bluetoothed up to a center where that’s being monitored. And if whatever the provider gives us – seven pounds in two days – if a patient games that much weight, there’s an automatic alert generated to their nurse or care manager and that care manager is on the phone with that patient, adjusting their medication. That patient is going to be home with his family on Friday night and not drowning in his own fluids in one of our EDs. So I’m watching this ability to establish these continuous healing relationships, for us to understand and move away from the notion of come-and-get-it care. That we only take care of you when you see us at our door and you come to our facility. So it’s very exciting to me to see us turning this corner. The more we move into ACOs, to bundled payments, to risk contracts, we start to see that the higher quality, the safer our care is, the more coordinated that care is.

Laura: 16:00 That is the business model for success under those new payment models. So you can probably hear the enthusiasm. I feel excited. Now it isn’t a silver bullet. I knew that because I watched the community in another state make some public announcements about, hey, we’re forming an ACO and, not a couple of months later, someone else said, oh yeah, you formed an ACO in this town. Well, I’ll tell you what, we formed an ACO and you’re not part of it. And then the big one in town said, oh, aren’t the two of you cute? We could stomp a mud hole with both of you and we formed an ACO and now you’re really in trouble. And I watched them stand up a health information exchange and I thought, oh, thank God they got the point here, they’re going to share data. Until the person standing it up announced that it was going to be private and it was just among their own ACO.

Laura: 16:53 And I thought of that patient with a cardiac problem that ended up with the brain bleed. And I thought, Oh my God, we missed the point that the health information exchange needs to be community wide. So no matter where that patient has chest pain, their data will follow them. So it’s not going to cure all ills. There’s still this cultural change that we have to make, almost a taking of an ethical high road to reground ourselves in the business that we’re really in. And that’s creating health.

Jennifer: 17:24 It’s interesting. I’m reading this book now, – why does this make me think of it? – but it’s called The Tending Instinct and it’s about responses to stress. The researcher who’s written it has dedicated her life to researching stress in humans and it’s with the idea that fight or flight is not really accurate. That is part of how people respond, but it tended be much more of a male-dominated viewpoint. And that when you look at a more holistic viewpoint of our species, we also have a tend and befriend instinct.

Jennifer: 17:58 And I think that is what we need to think about a little bit more in healthcare. Yes, we’re all different health systems, but how do we befriend one another and how do we work together to take care of one another because that is what is going to make the community strong. And that’s what’s going to make each health system strong. But it has not been that way. I mean, so far we’ve just kind of been hunting our prey one at a time and it doesn’t lead to good healthcare, as we’re seeing. So was that community able to turn that around yet?

Laura: 18:29 They went down the path and have three separate and private health information exchanges where the data is not going across those silos and barriers now. But I suspect over time they will recognize, as they get deeper into new payment models, that by Hospital A withholding its data from Hospital B and C that they will eventually financially harm themselves because those others will then be unwilling to share data back and none of them have the ability to succeed. So it’s almost a destruction of the commons.

Jennifer: 19:00 It amazes me how so much of it has to hit at the bottom line before people realize that. And I don’t think it’s everybody. There are invariably people within each system going, do you not see what this is doing? And then it just takes that for the whole system to suddenly go, wait a second, the system itself is broken. But hopefully that’ll happen sooner rather than later for everybody.

Laura: 19:21 Right. And another challenge is that our payment models only cover a very small percentage of patients right now. So I had a very ethical, just truly values-grounded person speaking to me in the last month that said, you know, I’d love to use these kinds of things that are coming out, these dashboards that alert me to multiple patients that need intervention right now, these real time things that you’re building. But frankly they work, and so when my physicians are using them in the community, they do reduce unnecessary hospitalizations and then I can’t keep my hospital afloat. So I feel them with one foot on one surfboard, one foot on another. And that to me is the worst part of the slow transition to new payment models. I’ve love to see that pace pick up.

Jennifer: 20:09 Wow. But I like what you’re saying. If they work to prevent hospitalizations, then the hospitals cannot stay afloat. So that’s the hard point in the middle where we are. Right?

Laura: 20:19 Exactly.

Jennifer: 20:19 Okay. Well, let me talk to you a little bit more about the patient and how you were talking about the patient as the North Star. Let’s talk about seeing them more as part of the care team instead of the patient that is being acted upon by a care team, which I think is how it traditionally was. Where do you see that going and how is that being accepted now? Because that’s a very big change from how medicine has traditionally viewed patients.

Laura: 20:44 It is a big change to start to see them more and more on their care team. I had a little battle with breast cancer a few years ago and it was so instructive and illuminating to me to be in the role of patient basically for the first time in my life. My life actually dependent upon the healthcare system. I can’t think of a better gift. It’s no gift that I would wish on anybody else. But for me, it galvanized and crystallized my purpose with what I was doing here. And I realized that our health information exchange, yes, we had been sharing data. We can alert every provider in the state of Rhode Island anytime their patient goes in and out of any ED or hospital in real time. And I got to thinking during that time, why in the world are we not giving that same power to patients and families? So we began a system here, a service here where a patient can designate any one of their choosing. It could be a nursing home patient with a daughter in Pennsylvania. It could be that opioid-addicted 23-year-old that’s now overdosed six or seven times and is in Rehab now and saying, I want my peer counselor or my family member or my brother … somebody to know because the last four times I overdosed alone and nobody knew that I was treated and streeted and sent back to the same condition that will eventually kill me. That idea of them being able to alert someone. So we built the ability for them to have that same alert sent on any device, any cell phone, any iPad to any one of the patient’s choosing to say, I don’t just want my traditional care team notified; I want my support network personally notified. The person of my choosing.

Laura: 22:33 And when I think about how it seems so simple but it’s such a breakthrough to regard them as someone who should be able to bring their own caregivers into that milieu, in that picture in real time as well. So I’m excited for what technology can do. It feels to me that the biggest breakthroughs are going to be around the doctor will see you now. And by that I mean really see you. Really see you as a patient and begin to understand more about the uniqueness, your social determinants, your own set of goals. And when I had my breast cancer, the goals that I wanted everybody to understand was yes, I was fighting to save my own life. But more than anything, I had an 11-year-old son and I wanted that child to grow up with a mother and if I could have had maybe a short video clip that was uploaded along with the rest of my data that went into my record here in Rhode Island so that any caregiver that opened my record could see a 30-second, 45-second video explaining my goals in my own words, with my own intensity behind it, what a gift that would be for caregivers to really understand where patients are headed.

Laura: 23:49 So I’m excited about what we can do to begin to monitor at home, have patient-loaded data brought in so that we can better understand things like where a person is in their readiness for change stages. We know that if you’re pre-contemplative, we should speak to you differently than if you’re on the cusp of being ready to change. For me, it’s the greatest frontier and I’m so excited that we’re on the precipice.

Jennifer: 24:14 I think that’s amazing and I love the way you talk about that. I think what you just said is such a huge breakthrough. Just a very visionary concept for every person who is getting care to be able to have a little video. So that anyone on their team can instantly, one, get to know this person, get to know what is important to them and what is most meaningful in their care for them. I think that gets skipped over – the caregivers. They want to do the very best possible. That’s why they got into the field, but they know so little about each patient that they see.

Laura: 24:50 Exactly. And think of the application of that technology at end-of-life. So now we have a piece of paper and of course you need a legal document, but wouldn’t it be amazing to have mom at the Thanksgiving table with brothers, sisters, sons, daughters. Everybody’s sitting around the table and mom is expressing her wishes for that period of her life with everybody there present to hear it while she can still articulate it. And n then if there’s any question, you bring that up and that patient is not just an empty chair because the patient’s in bed unable to speak. They have spoken and we have it in their voice.

Jennifer: 25:24 Absolutely. I think that would just take the burden off of so many families. And then they can just be with their loved one and not worry about those things, which is what they probably most want.

Laura: 25:35 Exactly. I realize, again, it’s not going to fix every problem with end-of-life care, but with all of these things contributing, we can move mountains.

Jennifer: 25:45 Absolutely. Laura, it is so amazing talking to you. I’ve gotten to do this once before and now we just had this wonderful conversation. I just want to thank you for sharing all this. You know, so much about data and you share it in a way that is so personal, which is not the way it typically is discussed. And I just want to say thank you so much for coming on the podcast and talking to us about this. It was amazing, it was just an amazing education for me to hear and I’m sure for everyone listening, and so thank you so much.

Laura: 26:18 Jennifer, it was my pleasure. Thank you.

Jennifer: 26:20 Thank you. And for everyone listening, you can learn more about Laura’s work with the Rhode Island Quality institute at Again, Laura Adams is the Founding President and CEO of the Rhode Island Quality Institute, which is the center of collaborative innovation in healthcare. Health Data Management named her to their 2018 Most Powerful Women in Health IT in the Thought Leader category. In addition, she’s currently co-chairing the National Academy of Medicine’s Health Data Trust Initiative Steering Committee and she serves on the Oversight Council for the Massachusetts Center for Healthcare Information and Analysis. So, for everyone listening, I’m Jennifer Michelle of, where I specialize in helping healthcare IT and provider organizations to get more leads. Thank you so much for joining us. Catch you next time!