Author: Lolita Alkureishi
Patient Portal: A platform for trust
As a physician, I use the electronic health record (EHR) to educate patients and empower them to make knowledgeable decisions about their care. However, as a daughter of elderly parents with complex medical conditions, the EHR takes on a more personal meaning – it’s my lifeline to their care team, and it enables me to coordinate their health care needs.
There’s a term for those of us in our 30s to 40s who are raising children while caring for elderly parents: the Sandwich Generation. As this generation grows, so does a unique subgroup of “long-distance” caregivers – those of us juggling medical decision making remotely. For me, the EHR and, more specifically, the patient portal allows me to fulfill this critically important role in my parents’ lives – from 2000 miles away.
Via the patient portal, I can order, pay for and arrange home delivery of their medications. I can communicate every six weeks with their geriatric pharmacist about the impact of tweaks in their medication management. I can schedule three-way phone or even video conferences with my dad and his geriatrician.
The patient portal enables me to communicate, advocate, and facilitate on behalf of my parents. More importantly, I’m made to feel my engagement on the portal is positive, and that feeling promotes trust – my trust in their care team, the care team’s trust in me as their partner, and also my parents’ trust and confidence knowing we’re all working together.
That being said, technologies such as patient portals and EHRs can be far from perfect. On my parents’ portal, a change to the pharmacy interface left me struggling to refill medications for nearly a half hour, which was worsened by the lack of a tech support option. A search for their annual residential care facility form unhelpfully generated hundreds of unrelated results, and still didn’t provide a way to submit it online to medical records. And then there are small things, such as that I can only know what their physician looks like; the rest of their care team (and my parents) don’t have the ability to upload their headshots. That might seem trivial, but putting a face to the pharmacist I speak to every six weeks would make me feel more connected to the team.
For patient portals to facilitate real meaningful use, they must evolve to meet the needs of patients and their families. Technical support such as a live chat feature, as well as advance notice of layout or functionality changes, can help alleviate user frustration.
Ongoing end-user input from patients and caregivers is critical – both in the form of real-time feedback about the user experience and through dedicated organizational engagement with patient and family advisory council representatives to seek their perspectives on the use of technologies such as EHRs. By developing platforms that are grounded in the patient and family experience, we can make real strides toward improving engagement, trust and the overall experience of care.
Lollita Alkureishi is a board-certified pediatrician with UChicago Medicine and Associate Professor in Academic Pediatrics at the University of Chicago & Clerkship Director at the Pritzker School of Medicine. Her goal is to provide continuity of care and preventive health care services for medically underserved youth. She was among eight winners of the ABIM Foundation’s Trust Practice Challenge in 2019.
The ABIM Foundation paired frontline physicians and leading experts to discuss building trust in health care.
Lolita Alkureishi, MD, a physician, and Gwen Darien, a patient advocate, focused on efforts to build trust by empowering patients.
Narrator: The ABIM Foundation paired frontline physicians and leading experts to discuss building trust in healthcare. Lolita Alkureishi, MD, a physician and Gwen Darien, a patient advocate, focused on efforts to build trust by empowering patients.
Lolita Alkureishi: Well, my name is Lolita Alkureishi. I’m an associate professor at the University of Chicago. And I’m a pediatrician.
Gwen Darien: That’s great. My name is Gwen Darien, and I lead patient advocacy and engagement for the Patient Advocate Foundation and the National Patient Advocate Foundation. And I am a long-term patient advocate and a three time cancer survivor. So I have multiple lenses and I have multiple questions to ask you about your really kind of incredible work.
Lolita Alkureishi: Cool. I’m excited.
Gwen Darien: So I wanted to start out with just exploring a couple of two theme or this sort of theme that I think is the overall theme that you’ve talked about, which is the way of using an HER (Electronic Health Record) to build, facilitate communication and to build trust. Because I think that’s sort of the heart of what you’re doing here. And so this is the foundation of the story and this is the foundation of what you’re doing. And so if we could just start there, that would be great.
Lolita Alkureishi: Yeah. So you know, the way that I came about making this comic was when our clinics went live with the EHR and it was a process and, you know, I got to be IT flying the wall, you know, just watching patient interactions. I was trained as a super user. And so I was in the room as my colleagues were seeing their patients and I was able to witness firsthand how this thing was really changing that dynamic and not in a good way. And it’s really what inspired us to look at, you know, what are the ways that the computer or the EHR impacts that patient experience on both ends and not just the behaviors and the nonverbal communication and the verbal company communication, even though that’s super important, but how does it impact it from the perspective of the patient? What do they think? And that really helped us identify the things that we wanted to stay away from and then the things that actually helped, ways that you could promote. The engagement, promote shared decision making, really make it a collaborative tool that could be used together. And that was kind of the birth seed of it all for us.
Gwen Darien: Because I think that, I don’t think I’ve ever heard anybody say that an EHR could be a way to facilitate, build trust. We usually think of it as the barrier to trust and barrier, the distancing and the mediator to communication. So that was really—that’s fascinating about this project.
Lolita Alkureishi: Yeah. And we called it the positive deviance. So when we did our literature review and we found all these studies, there was a small core group of studies that had these positives and it was exactly that. The using shared decision making tools real time with the patient so that, you know, you’re reviewing stuff and what do you think. And just really fabulous little examples but not many, because so much of, you know, what you see is ah, it’s so burdensome and so many clicks and you know, just the weight of charting and all that and it’s all very negative. But there are these little positive areas that I think are inspiring. And as much as we can capitalize on those and not be weighed down by the negativity, I think that that’s one, that’s interesting—ways that it’s not just the EHR. Like you have a computer with internet, use it, capitalize on it. I tell our medical students build your tech toolkit of tools, websites, apps. This is my go-to handout. Like just think creatively. If you were in the other chair, what would you want? What would help you understand what’s going on? Tap into that and just build your resource kit.
Gwen Darien: I think it also speaks to sort of the difference in the way that people interact with their doctors. And then they used to, in their healthcare providers and doctors and advanced practice nurses. And I mean, a long time ago, you expected your doctor to know everything and if they didn’t know everything, you didn’t trust them. Now I have to say, so I had an interaction with my oncologist, and she said to me, and she’s highly trained, I love her. And she said to me, let me just make sure, let me just make sure that the guidelines haven’t changed for this drug I wanted to give you. So rather than 20 years ago, I would’ve said, oh my God, you don’t know anything. I need a new doctor. I was saying, wow, she is a really careful doctor. She’s using the EHR and she’s using the internet. So this idea of what we can learn from the internet has also changed what practice has been. And I think that’s another really fast, that’s another really interesting part of this project was this idea of using the internet.
Lolita Alkureishi: Yeah. And it’s almost like, you know, we’re in this together, let’s journey together, let’s figure it out together. And that’s the whole thing about, you know, sharing the screen. Let me bring you with, let’s send this prescription together. Like this is your chart, so you should, you should own it. You should feel like you can get involved. And that discussion doesn’t have to stop when that clinic visit is done, let me tell you about the portal and you can access your entire care team. That conversation, that dialogue can extend beyond, you know, the 15 minutes in the confines of that room. So yeah, I think it’s really almost like a gateway to let’s create your chart together. Let’s come up with the answer together and it feels less heavy, I think. It’s I’m not doing this alone. You’re not doing it alone. We’re kind of doing it together. So let’s do it.
Gwen Darien: Yeah. So let’s hold that thought one second and then step back to do this the context a little bit around it. Because I think one of the things, I was really struck by the conversation about sort of hold it, what is it honoring the golden moment?
Lolita Alkureishi: Yes.
Gwen Darien: Because I think that one of the ways, I think that people sort of jump to the middle of the conversation often in this. So many of us and many patients, and you may have had this experience of patients, is that the physician doesn’t come in and talk to you. They immediately look at there, they immediately look at the computer screen and then turn to you. And so one of the things that I think was so successful about the way that you presented this, and then I want to talk about the comic and some of the other aspects of it, was that you put it in the context of the whole visit so that you, there were ways of setting it up so it didn’t feel like a barrier. It felt like a tool.
Lolita Alkureishi: Yes. Yeah. And so exactly, honor the golden minute. So when you walk into the room, even though you know you need to log on, don’t make that the first thing you engage with because that tells you, oh yeah, you’re there, but I need to focus on this. This thing has my attention and it has it over you.
Gwen Darien: It’s more important than you.
Lolita Alkureishi: Yes, it has it over you. And just physically, the act of like the first touch is so important in medicine, the physical act that you touch that first and you don’t touch your patient is just so wrong.
Gwen Darien: That’s a critical point.
Lolita Alkureishi: It’s so important. And you know, I can pull up your chart and in fact, I should’ve reviewed it beforehand so I can kind of set the stage. I can figure out, you know, why I think you’re there. But let me open that up to you. You tell me why you’re here. What can I do for you? And then exactly, like you said, when it’s the right time to bring it into the conversation, then you do so naturally and you don’t, and you don’t let it dictate the conversation. You guys determine the conversation and then you pull this in when you think it can enhance it.
Gwen Darien: So that’s what you mean my patient centered EHR use.
Lolita Alkureishi: Yes. Yeah. Finding a way that you could use it that’s unique to each patient. Some patients might not want to engage with it and that’s okay. And some may, what is that? What are you clicking there? And some people may be overly interested in it. Gauging that and then using it to provide them their specific education, making it specific to them, honoring their values, their wishes, but HER patient centered care that allows them that opportunity.
Gwen Darien: So let’s talk about how you came to do this comic and it’s a way of helping to create this really more patient centered way of using an EHR.
Lolita Alkureishi: Yeah. So this is the comic that we created. And it’s called computers in the clinic, your role. And so we set it up ABC format, super simple, super easy. A, ask to see the screen. And so there’s an example of where the provider isn’t doing that. And then another one where they are doing it. B is become involved. So review your records with your doctor that you can ask questions and then C is my personal favorite. And that’s call for attention. If you feel you have something important to discuss, if you feel like the provider’s too focused on the computer and isn’t paying attention, you can wave your hand and say, hey, redirect back to me. So yeah, and it’s colorful, it’s visual, it’s fun.
Gwen Darien: And it’s available to anybody.
Lolita Alkureishi: It is. Freely available to anybody that wants to use it. They’re cool.
Gwen Darien: They are cool.
Lolita Alkureishi: They’re very neat. In fact, when we were passing them out, like as part of this study, people were like, what’s that? I didn’t get one. Let me see that. And the kids loved them. And so it’s fun. It’s engaging. It doesn’t take a lot to explain it. In fact, we didn’t explain it. We just gave it to them. So in terms of the resources to implement something like that, they’re really minimal. It can convey your message really clearly. And it’s a narrative which I like because it’s all building the narrative. It’s a story to let you tell your story. And we have a diverse patient population, so we needed something that could appeal to, you know, somebody that had a PhD and somebody that didn’t finish high school and everything in between. So it was a cool, fun kind of vehicle that we could do that. And we created not just the patient comic, but we created one for providers
Gwen Darien: Yeah, that’s what I was gonna ask you to that. So you created the two of them.
Lolita Alkureishi: Yeah. So the provider one, the title of it is ‘Which Would You Prefer?’ And on one side, it gives a not ideal way of using the computer with a patient. And then on the other panel, it shows you a more ideal way. And it’s the same as this comic. It’s three different core kind of behaviors that we found both through our own experience and in the literature. And we put the comic up in their workspaces. So where they were charting, there was a big one on the door. You see it when you go in, you see it when you come out. Because even though we had built, you know, curriculum to train providers and we did this big like four-hour CME thing with the Cleveland Clinic, we did standardized patients and that is very intensive. And the people that were coming to the training were already really good communicators. They were just, you know, up and get to the next level. And the people that we weren’t able to get was the busy doctor that’s in the room, that’s charting. And so we thought, well, let’s just put them up in their workspaces and don’t even have to explain it. It’s right there. And it’s just a little primer to say, you know what, when you walk in the room, just think about the person on the other side, which would you prefer? How would you like it?
Gwen Darien: Right. And because all doctors or patients at some point or another.
Lolita Alkureishi: We all are patients.
Gwen Darien: Everybody.
Lolita Alkureishi: We all are. And our husband is a patient and our kids are patients and yes, the shoe will be on the other foot.
Gwen Darien: So tell me a little bit, one of the things that was really interesting I that to me was the… how this seemed to close the gap even more from patients who were in traditionally underserved populations.
Lolita Alkureishi: Yeah. So that finding that in persons that were of minority ethnicity, so African-American, Hispanic patients, found the comic more empowering. It encouraged them to get involved more. They actually took steps to get involved. Self-advocacy things like if the provider was paying too much attention to the computer, it gave them more than our white patients kind of the courage and the authority to do so, to say, hey, I’m over here. Can we focus this back on me? Or asking, can I see that? Can I see this in my chart? And same goes for patients that had lower educational attainment, that they were more likely to take part in these, I call them EHR self-advocacy behaviors. I think probably because these populations, not just in medicine but in life, have made me not had that kind of opportunity. They didn’t know it’s their right. As compared to other populations. So maybe these are more vulnerable, more marginalized populations. And you know, I personally don’t maybe necessarily need the comic because I know that’s my right. I could do that. That’s my chart. I can get involved. But if I don’t, I haven’t been invited to this discussion, this conversation, this is almost like the invitation to say like, no, this is your right. It’s everybody’s right. Let’s engage together.
Gwen Darien: So I think that it is, I mean, one of the things that we were talking that we’ve been thinking about and talking about is this notion of power differential. So it sounds like the comic helped equalize the power differential and gave the patients, particularly the underserved patients, a sense of what their power was in this relationship.
Lolita Alkureishi: Yeah. Yeah. And I think what really speaks to that were some of the open ended comments that we got from patients that really got at the core of it. It wasn’t so much the computer, but one of the most striking comments was somebody said, I really liked the comic because I didn’t know I could ask questions. Which is like what? You didn’t know you could ask. Of course, you can ask. This goes beyond the EHR and the internet and this is like at the core. Of course, this is a partnership and if you don’t trust in that, if you don’t think you can ask questions like we’re not going to get anywhere.
Gwen Darien: But I think many patients don’t think they can ask questions and they aren’t invited to ask questions. So I think this was the other thing that I found really pretty, really kind of very progressive and groundbreaking about this is that it really facilitated that notion of being able to ask questions. Cause I don’t think it’s just traditionally underserved population. I think it’s the difference of being in a gown in the doctor’s room. I mean, it doesn’t matter, your self-advocacy skills fly out the window no matter who you are. But this idea that you were given this sense of the doctor and your healthcare provider in the system trusted you enough to give you the permission to ask the questions and see the screen. That’s a really powerful thing to see because I don’t think we’re not used to that. We’re not used to seeing the screen. We’re not used to somebody showing us our chart. That stays away from us. It doesn’t come towards us. And I love that idea of this kind of triangle and this space of being able to, being able to really ask questions and not just being given permission to ask questions, but being encouraged, being told you’re a partner, that you’re not just a subject or an object. So this is really, this is really great. I mean, and it’s also so simple. That’s the other thing.
Lolita Alkureishi: It’s so simple.
Gwen Darien: I mean, it’s just incredible. It’s so simple.
Lolita Alkureishi: It’s what your grandmother would tell you. It’s what your mom would tell you. It’s like, you know, use this as a positive. When it’s not the right time, don’t use it and use it with me. Because it’s ultimately their chart. In fact, we should be asking permission.
Gwen Darien: Right.
Lolita Alkureishi: Can I open up your medical chart? Can we cocreate your narrative together?
Gwen Darien: Right. So what’s next?
Lolita Alkureishi: So we’re looking at ways that we can try and scale this up so that it’s not just, you know, in certain departments, but that it’s part of our message. This is who we are. This is how we’re going to involve you, and this is what you can do to kind of get engaged in that process. This is a relationship.
Gwen Darien: And do you think of it beyond the EHR? I mean, the EHR was the impetus for this and the Genesis of this, but it seems like it is potentially a blueprint for other….
Lolita Alkureishi: Yeah, yeah, yeah, for sure. And at the heart of it all, it’s trust.
Gwen Darien: Yes. All right. Lolita, thank you for such an incredible conversation that was really, I look forward to seeing how you’re going to use this. I look forward to seeing how you’re going to scale it and I look forward to the fact that these simple solutions can make a really profound change and trust and communication. So thank you so much.
Lolita Alkureishi: Thanks so much for having me.
Narrator: Visit buildingtrust.org to learn more.