After being diagnosed with a malignant brain tumor following her 29th birthday, Liz Salmi began blogging about her patient experiences and the frustration at being unable to review her own medical records. Now as the Senior Strategist for Outreach and Communications for OpenNotes, an international movement that’s making health care more transparent, she advocates for the use of technology and data to empower patients, families, and caregivers to feel more in control of their health care decisions, improve the quality care and address health disparities.
In this episode of HealthChangers, presented by Cambia, we bring part two of our panel discussion that brought together multiple perspectives on the topic of where – and how – technology meets health equity. Led by Cambia Health Foundation president and board chair, Peggy Maguire, and Catherine DesRoches, Executive Director of OpenNotes, this panel welcomes Dr. Joann Elmore, a professor at the David Geffen School of Medicine at UCLA, Peggy Evans from Neighborcare Health, Josh Lemieux from OCHIN, Liz Salmi, Senior Strategist Outreach and Communications Director for OpenNotes and Nancy Vukovic, Cambia Director of Consumer Experience.
You can listen or read part one of the panel discussion, “HealthChangers Podcast: Where Technology Meets Health Equity, Part 1 of 2,” on our Cambia Pulse Blog.
Catherine DesRoches: I have a question directed at you, Joanne and Peggy, about what you see the providers in changing technologies. How does this rapidly changing technology affect providers, and what do you see as a change in their role?
Joanne Elmore: I'll share my comments twofold. We're called providers, but I think we're going to be members of the team. That's the first point I want to make. We need to engage patients more actively. We need their help. And there's a lot of physician burnout. I remember a decade ago, when Jan Walker talked about bidirectional communication, and how no one cares about the patient's health more than the patient, and how we should get more involved with them. And she talked about, instead of open notes, the hour notes, and this became a reality for me at Harborview, because of an experience I had with a patient.
I was in with a very manic patient, and I had the computer screen turned towards her, and I was pointing to things, trying to explain to her how to navigate through the portal, and trying to explain to her how helpful it might be for her to read the notes, so she could help me clean up her medication list. I typed one sentence and I went to point it to her She started laughing at me, and said, "Doc, you're a terrible typist." And she grabbed the keyboard away and said, "Let me type it."
Well, I was a little bit afraid, because truly, she was really high and manic. But I just thought, "Let me go with it." And she said, "Tell me what to type, Doc." So, I explained to her that this is the part of the clinic note where I ask the patient, “Why are you here?” “What do you want to accomplish?” “What are your goals?” “How have you been since I last saw you?” And I said, "That's what we need to type here." She was quiet for quite a long time. Then she cracked her knuckles and said, "Got it." She started typing. And it was so beautiful and so much better than what I would have done, that I just said, "I love it.'
And she saved me, because I spend late nights typing the notes. And we did a small pilot project at Harborview, where we had medical students come in early, and they typed part of the note, and I have to admit, I didn't know that some of them could be a member of the team. I didn't know some of my patients could type. It was marvelous. The physicians loved it. It saved us time. It gave us insight. Going forward, it showed us all we need to be part of a team.
The second comment I want to make has to do with our practice, and where I think the notes should be going. And I have both hope but also fear. Our clinic notes were developed to remind myself about the patient's diagnosis, their treatment, their medications, the plan. Increasingly, it became filled with billing junk. But it's going to be, going forward, in the future, part of our toolbox for communicating. And there is an art of medicine, not like the art of painting. Medicine is more like an applied science, and communication is critical to our practice. And I think going forward, our clinic notes need to get better. Their templated, they're terrible.
I was taught a language that is hard to change. I was taught to use words that I think are very judgmental and inappropriate, and it's hard stopping myself from typing "disheveled," "denied," "declined." I use abbreviations: "SOB," shortness of breath; "BS," bowel sounds. We need to learn a new language. What we say, how we say it, when I'm with a patient, is part of my practice, and is important in interacting with patients. Now they're getting access to their [medical notes] that are black and white and can come across as harsh. And again, I have hope for this, but I am worried, because us older doctors, we need to be retrained, and I don't see anyone working at the education level of physicians or the three million nurses that are out there. I think we have a lot more to do in this regard.
“We need to engage patients more actively. We need their help.”
Peggy Maguire: I agree with everything you just said. I think providers lives have changed quite a bit in the last decade, as value-based payment and accountable care becomes more and more prevalent. What I have seen is a lot of providers having tension between taking care of the patient and being a typist. And depending on your electronic health record, you could be doing more typing, or clicking around templates, spending more time documenting what the patient visit looks like than listening to the patient.
The most impressive provider that I had a chance to shadow typed without looking at the computer. He was able, somehow, to communicate with the patient while also working with the electronic health record, and not everybody can do that. I've also seen providers type with two fingers, which I was a little afraid to look at their notes, honestly. But I think that as we move more towards accountable care, which means that we show performance metrics through data, that's a good thing, but it also means that now providers are spending a lot more time documenting.
Joanne also mentioned team care. I strongly believe in that, as well. While electronic health records gather the information and help doctors identify who their complex patients are, providers can't do it all. They work with medical assistants, registered nurses, and behavioral health consultants, and other clinical auxiliary staff, as well as front desk. We need to think about how the patient moves through the system and how can we work at the top of our licenses to manage patients as they go through their visit.
Lastly, I think one of the things that's really going to change the way that providers interact with patients is tele-health. So right now, patients might be in the room, and they're typing. But eventually, it might be FaceTime, or Skype, or some other method, and we're really going to have to find a way to connect with the patients and document when they're not even in the room, and it might have been a warm handoff by someone who's is with the patient, or it could be a completely cold connection, as well. And that will be a challenge, as well.
OpenNotes is a Call to Action for Health Care Systems to Share Medical Notes with Patients
CR: Thank you. The next question, this one is directed to Nancy [Vukovic] and Josh [Lemieux]. Both of them have experience working at Intel. They were involved in the very early years in the consumer health care movement, and the question for both of you is: How do we ensure that today's technology-based solutions are not creating a bigger divide between the have and the have-nots?
Nancy Vukovic: I think it's very important to consider, and I think Josh will have something to say about the impact of mobile devices on doing that. I'm not going to delve too deeply into the technology per se, but some of the context surrounding it I think is important for us to consider when we think about whatever technology needs to be thrown at it. I think mobile's a great solution today. We're moving fast and furious into new technologies that may provide different solutions. Keeping in mind what the needs are, gives us a sense for how we solve problems.
In terms of giving people access to their notes, I think someone mentioned being invited to participate. That's a critical piece of it, is people not only need to know that it's there somewhere, but that it's there for them, and that they're invited to it, they're empowered to say something about it, to use it as a point of discussion with their physician. Otherwise, it just becomes something that's just there, that people may or may not access, may not even know about. So how do we find ways to empower them to use that information for their own benefit, but also to engage in more decision-making with their providers.
When we talk about access more specifically, it would be useful to know how people can get this information. I think mobile is certainly a way that affects many people, but not everyone in every situation, either because of their age, or where they live, or how they live, they may not have access to mobile devices or other kinds of technology. It's worth us investigating that when clinicians engage with their patients. How might you be able to see this? And if so, are there ways that a practice can support that by having tablets available for someone to look at while they're there before they leave?
“People not only need to know that they can access their [patient notes], but that it's there for them.”
Also, we need to think about access in terms of what people have in terms of their social network to support them. People bring their notes to someone else to help them interpret. But they may or may not have that person. Again, as part of our assessment of what the environment is like for our patients, it might be useful to know about who is in their network that can help them, and is that person really the appropriate person to help them interpret their information? Is there some other resource that we can provide to them? Not just to translate it from another language into English but also to interpret our clinical notes into everyday language. I think we've had clear evidence of the fact that even though someone may be walking down the street with a Ph.D in medical anthropology, I still don't know what you might write in your notes. It could be very obscure to me. So how can we [in health care] not only write notes in a way that people understand it, but also provide them tools to understand it better.
And then finally, I'd like to think about accessibility and an ADA (Americans with Disabilities Act) approach. Providing contextual information is useful to perhaps the vast majority of people, but there are folks who are visually impaired, who may have other kinds of restrictions that make it very difficult for them to read those notes. Once again, having that as part of the assessment may enable us to provide some supports that we would think of, just by looking at someone sitting in a chair and understanding what they need.
Holistic Health Care Transformation Needs Civic Participation
Josh Lemieux: I'd give the simplest answer: don't count on Silicon Valley or the Silicon Forest to solve the problem on their own in an equitable way, because they have enormous capabilities, and they're going to be investing in all kinds of ways to get all kinds of information up into the cloud and provide all kinds of services back. They will marvel at their own technology. We will marvel and become enslaved to it. It's awesome, but it's not driven by equity at its fundamental level. It's driven by shareholders, and stock prices, and things like that.
I think that we all have, as members of this health care transformation community, is every form of civic participation. You need to realize, it starts with just the fundamental approach that our health care system really makes everybody a little vulnerable, right? I mean, the economy's great right now, but people can become low income fairly rapidly in our economy, and we have relatives, some of them may have mental health issues. They're instantly in a vulnerable population. Women are not treated the same as men in research or care. That's 51% of the population, so I think it's just always putting pressure on innovators to be thinking of everybody, and realizing that when we think about health equity, as I said, not only justice, but an economic imperative, because the trends for health care costs, and the trends for increasing disease that just, diabetes or Alzheimer's, are unsustainable in this country.
We have a very unhealthy population compared to what it could be if we optimize primary care, mental health, dental health, and reached out, not only from the clinic and the hospitals, but into people's homes with e-consultation, and tele-health.
If we put pressure on the innovators, and the delivery system, and those who pay, the payers and large employers, and critically government. Government sets standards, like the 508 standards, so everybody can read a website. Would the private system have done that on its now? Not at all. I think it's mostly a mindset, and that takes a lot of advocacy.
Human-Centered Design as a Health Care Social Justice Tool
CR: Okay, I want you to be thinking of the questions that you would like to ask this wonderful panel, because this is our last question from up here, and this question is directed to Liz and Nancy, and it really is a question of how can we work better together to design solutions for consumers and improve population health?
LS: Sometimes, in talking about open notes, people say to me, "Well, if you provide notes through this electronic portal, aren't we widening the gap in the disparities?" And as we've talked a bit today, we know people have more access to tools than we might think they have through their mobile devices. They can get online, they can use portals. Not everybody has fancy data plan to go online, but more and more people have access to free open WIFI, where they are able to get online. Figuring out what do people already have access to and how can we take advantage of those things to get them the information they need. More and more folks are talking about the concept of design thinking or human-centered design, and really designing solutions for the end user than maybe for the clinicians themselves. We don't design cars without involving drivers, and saying, "Hey, does it feel comfortable to sit in this car?" And, "Do you like where the cup holder is?" Involving patients in the design of solutions [is the answer]. Who'd have thought?
And including patients, actually, in research, so if any of you are familiar with Patient-Centered Outcomes Research Institute, or PCORI, they believe we must include patients in the design of this research project, then ask patients and their care partners what is meaningful to them. Why research something if it isn't meaningful to them? Hospitals and health systems more and more are creating patient family advisory councils, where users of the health system can advise on projects, concepts going on in the hospital and health system; giving those patient family advisory councils some teeth. They're not just lip service to say, "Yeah, let's use that kind of carpet square.” It’s about really involving them in something meaningful.
“More are talking about the concept of human-centered design; designing solutions for the end user rather than for the clinicians themselves.”
I'm really interested in millennials. I'm six months too old to be a millennial but I can talk about them. I guess in a couple years, people who are younger than me will be the largest decision-makers around health care how dollars are spent, and so they are not only taking care of themselves and making decisions for themselves, but also for their children, and then their parents, and maybe even their grandparents. And so, if we're not designing health tools that appeal to those folks, like they would actually use, we might be behind. So, think about how those folks are getting information, and making decisions, and buying things.
And then I'm really interested in around proxy access to health information and the portal. For many reasons, we have this rapidly aging population, and I will be caring for folks older than myself. My mother, and then my in-laws, always contact me to help ... they want me to be involved in their care in some way, and I do not live near them, but they want me to have access to the information from their health records and visits. And with our electronic health records and our patient portals, there is a way to grant those you trust to log in and look at that visit information. And it's very rare that clinicians let the patients know, "by the way, you can let your family members and those you trust look at what just happened in this visit." And so, talking that up, in addition to signing onto the portal, looking at your notes, how can we involve the full care team and the families, get them involved in seeing this information and having access to it. Those are some of my ideas.
“People can become low income fairly rapidly in our economy. They're instantly in a vulnerable population. We need to always put pressure on innovators to be thinking of everybody.”
NV: Great ideas. I have to echo what Liz is saying about employing human-centered design. That's the place I live day-to-day in terms of looking at health care and how to transform it. And I think it's really critically important that we understand not only what people we're building for, whether it's patients or providers, what they are going through, but also to make sure that we continually go back to them to understand whether we've gotten that right, whether our assumptions are right and if what we're building is appropriate for them.
I would argue that we need to be talking about culture change, we really need to look systemically at what's happening. Not just at the patients and their caregivers, their family members, but also at the providers, because they're at a pivot point in terms of making sure this information gets out to them, that it gets written in the right way, that there's a negotiation in terms of care.
The questions that I would ask are: How do we encourage culture change? By looking at the various players within this whole system, identifying what roles they play and learning about the tools do they have access to and how they can interact with each other? I think that's where we can make some substantial change.
One thing that struck me as we were talking about clinicians writing notes is that I have seen many of them do this, and it's a process of trying to get the information that needs to be in there, from a billing perspective, or a medical clinical perspective, and in doing so, and in trying to not make mistakes as you're typing it in, you have to wonder how much clinicians or doctors are actually listening. And this is something that, it struck me because I train people how to do interviews, and oftentimes, if you're so busy scribbling notes, you haven't heard what a person has said. How can we encourage that process, either in terms of the people who are working with the patient or how the teams do it? How can we help people working at the top of their licenses by training them [better] in medical schools? There's a variety of different places where this kind of culture shift can begin to happen, and I think it's worth looking at it from a whole system perspective.
OpenNotes Can Bring Health Equity, Empowering Patients
CR: In terms of human-centered design, can you just say a little bit more about that?
NV: Design thinking is another term that's been used, and the processes are analogous. But basically, it's about understanding from the user's perspective, who is going to be using your tool or your system or whatever. What's their circumstances? What are their barriers? What are their motivators? What is their life like? What is the problem from their perspective? Because oftentimes, I think as a health system or as a designer of whatever it might be, a product or service, we come in and we say, "Oh, we think we know. They've complained about this, so we're going to fix that." And then we fix it. But really, that's not the problem. The problem is not what has surfaced as a problem, but it's maybe a larger issue that really, if we address that, it's going to correct what the complaint was.
In human-centered design, we try to get to that underlying, what in our terminology is called an “insight,” because it's not just the what, but the why behind the what, that you need to address to solve that kind of problem. And then, again, in the process of creating the solutions, make sure that we continually get feedback from the people that we're trying to serve, and iterate on it until we come as close as we can to solving that issue.
CR: Thank you. Okay, now we'll turn to audience questions.
David Geffen: My name is David Geffen. I'm an architect, an actual physical architect. I work on health care facilities. And quite often, what we encounter when we deal with exam rooms, I cannot tell you how many layouts have I gone through whereby we get into the issue as to how you deal with a keyboard and the screen, and how to prevent it from becoming the barrier between the clinician and the patient and the patient family, and so on and so forth.
To some extent, the idea solution would be, let's get rid of the keyboard. Let's get to the point where we can do it verbally, and maybe AI can sort out everything that is out there. I know that I'm talking about way out there, but maybe it's not.
JL: We have actually heard from our patients. We have data from over 25,000 patients, and a few of them typed in what they thought about having computers in the exam room. And one of them even said it's hard, and they said, "We ought to just put a smiley face on the back of the white coat." And it's really sad, and I struggle with it. I end up typing my notes after the patient is gone, because I haven't come up with a solution. I definitely do not like the setups where the computer is here, and I've been appalled when I brought my high school son in for his physical exam for sports, that the doctor didn't even look at him. It is something that we really need to do a better job with. I appreciate that you're thinking about it.
Tina Maloney (audience question): I'm Tina Maloney, and I kind of grew up running health care clinics, and I've done strategy for a long time. For the last year and a half, I've really just been looking at, where's the business model to actually care? And I think a lot of you have spoken to pieces that I've really been trying to investigate around. Peggy, I loved what you said. What we really need is to be able to connect with other providers. What we really need is to find a bridge. I think Josh, you said between Silicon Valley and those who want to make money on this, and those who really need to play.
I'm curious if any of you have found, or are thinking about, what is the business model to start connecting the white space between all, even all of you, and philanthropy and for-profit, and public-private, like who's playing in the white space? Because it seems like that's what's so often missing in this conversation.
PM: There isn't one big business model, but there's a couple, I think, that we can point to. The first is, in 2020. Washington State is going to go to integrated managed care, which is basically behavioral health and medical are coming together. Also, dental managed care is supposed to start in 2019. And I think that that is one opportunity for us to have closer care coordination between medical and behavioral health; behavioral health into primary care, as well. I think that that's one area.
I think the other business model is related to complex care management. For our most complex patients that need to go to the hospital, or that need to have specialist care or so forth, there really needs to be somebody within the medical home, the primary care entity, that is tracking that patient and really helping them navigate all of these different resources as well as the community resources that they might need for social determinants of health, like transportation. That's a big one. Or nutrition, or other types of needs.
I think that there are business models. It's comes in sort of strange silos.
JL: The business model for virtual care still needs to be built out. There was a discussion before this event this morning about how we can't reach everybody, especially with mental health and substance abuse counseling just with the face-to-face visit. In order to have a virtual relationship, you have to have some initiation of an account and things like that. The patient portal, the online phone app sign-up, those are critical elements that open the door to better efficiencies: online scheduling, online drug refills, labs delivered online, fewer callbacks, less telephone tag, greater efficiency. I think that “open notes,” that phrase that comes up is on the same page. I don't know what part of our culture that came from. Nancy would probably know as an anthropologist. May have been singing hymns in church in church or something. I don't know, but that's what it is, right? But our pages these days are digital, and they're on screens.
CR: I really want to thank the panel for sharing your insights today, and for being with us here. Thank you.