Beyond outreach and direct patient care, how can health providers connect with patients who already feel marginalized? And how can these patients feel like they’re a part of the conversation surrounding their own treatment?
In this episode of HealthChangers, presented by Cambia, we present a panel discussion that brings multiple perspectives together 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 and Liz Salmi, Senior Strategist Outreach and Communications Director for OpenNotes.
Leslie Constans: In today's episode we'll have the first of a two-part look at the intersection of technology and health equity. This topic was the focus of a recent panel discussion at Cambia Grove in Seattle. It's a health innovation hub bridging the gap between entrepreneurs and the health care sector. The panel explored technology and health equity in the context of an initiative known as Open Notes. The idea of OpenNotes is to improve health care transparency by sharing clinical notes with patients. The moderators of the discussion were Cait DesRoches, executive director of OpenNotes, and Peggy Maguire, the President of the Cambia Health Foundation.
LC: Peggy began by asking each panelist to discuss their work.
Peggy Maguire: We're starting with Dr. Joann Elmore, who is a professor at the David Geffen School of Medicine at UCLA.
Joann Elmore: I'm the token physician on the panel. About a decade ago, I was working at Harborview Medical Center, our county hospital here, that takes care of vulnerable patients in King County. I was head of general medicine, and we had five or six outpatient clinics. They asked if I would help with OpenNotes, and I thought, number one: of course. This is just the right thing to do. And number two: I appreciated their including Harborview because I did not want there to be a digital divide. I really care about our vulnerable patients, and it was a privilege and an honor. I was the lead investigator at Harborview, until a few months ago when I moved to UCLA.
PM: Well, welcome back to Seattle, and thank you for joining us. Next I'd like to introduce Peggy Evans from Neighborcare Health.
Peggy Evans: As Neighborcare's Chief Transformation Officer, I spent a lot of time thinking about how to outreach to patients form vulnerable populations; people who are on Medicaid, patients with English as a second language, homeless populations. And I also spent a lot of time thinking about how to surface data to providers so that we can close quality gaps. On a personal note, I'm an immigrant. I have grown up, actually, as part of a vulnerable population. In my childhood, I spent a lot of time helping my parents navigate health care, even though I was a child. And now as an adult, I spent a lot of time helping them navigate health care in addition to a lot of things.
PE: So in addition to the fact that I'm in health care, and I do a lot of outreach to patients, I also understand it from the flip side, which to say: it's really hard. And it's not just hard because of language or cultural barriers, but because patients in vulnerable populations have a lot going on in their lives. And we need to be sensitive to that as their health care providers.
PM: Thank you, Peggy. And next, I'd like to introduce Josh Lemieux. Josh is with OCHIN. He's a member of the executive team, and he leads funding partnerships for technology, innovation and research, to advance health equity.
Josh Lemieux: First, I want to thank you, because if we're talking about health equity, I think you have invited the right people. The first three here are all in what's called ‘the safety net’ or backgrounds in community health centers. And that's really, I would argue, where the action is for health equity, particularly for the younger population. But the drive toward taking a look at what is the real social context and the medical complexity context, and what is the array of services that can help people more holistically, I think is a very important discussion that is being driven by foundations such as the ones that are sponsoring OpenNotes and other things. It's a critical effort around justice, and it's also a critical effort around the financial sustainability of the country. So I'm looking forward to the discussion today.
PM: Thank you, Josh. Next I would like to introduce Liz Salmi, who is the Senior Strategist Outreach and Communications Director for OpenNotes.
Liz Salmi: Hello, everybody. Part of what I do at OpenNotes is work with our communications team, specifically on the digital side, but also on our research dissemination team. So we go out to hospitals and health systems around the country to talk about what OpenNotes is. What makes my delivery of that information a little bit different than maybe a doctor or another health professional is I come to all of this from a patient perspective.
LS: So, I do not have a professional background in health care up until the last few years. Ten years ago I was diagnosed with a malignant brain tumor. Around this time a lot of the online portals were starting to get kicked off and adopted everywhere, and patients were learning, "Hey, you can login and email your doctor and set appointments." Using that portal became really important to help manage my care. Over the last 10 years, I've had a front-row seat to watching how different people use this technology and be part of it myself, so I'm really interested on the changing nature of what patients have access to, the information and what we do with it and how that might reduce disparities in different populations.
PM: Thank you, Liz. And next: Nancy Vukovic. She is the Director of Experience Design at Cambia Health Solutions. Nancy focuses on understanding consumers and using insights to drive consumer driven innovation. Welcome.
Nancy Vukovic: Thanks Peggy. Over the course of my career, even though I'm not a provider of health care, I've had the opportunity to work with providers and with patients, and understand from their perspective what it's like to go through the system. And very often we've heard from patients that they're confused, they're scared, they feel out of control, and have seen the effects of providing information to them in a way that they can understand, at a time when they can understand it. Today, I'm hopeful we can discuss how technology can help to bring that to people in a way that really helps them to engage not only with their providers but with their family and others in their care circles, so that they can provide support to those individuals who need it, and also help them to adhere to the kinds of things that their providers may be prescribing for them.
NV: It's really critical that people engage with their providers and make that decision in a joint fashion. I think we'll have a good discussion today about how we can bring those pieces together.
PM: I'll direct the first question to Peggy and Josh. Both of you work every day in the safety net, and some people might be surprised to learn that it's more than compassionate care, but it really is a hub of innovation for diverse populations. I'd love to hear your thoughts about what is most exciting to you in terms of the use of technology in the safety net, and how that helps us to achieve health equity.
PE: Given that we are a community health center, many of our community members are on Medicaid. And it's actually very hard to reach out to patients to have them come back for care. We've developed a strategy, recently, to start texting patients with updated care guidelines, telling them that they can come back in, as well as a letter, outreach and a call. And we have found that what we call a “TLC approach” (text, letter and call), has resulted in about 20 percent more patients coming in than last year before we started this effort.
Leveraging texting technology for patient outreach
PE: Texting in particular is really important as part of the strategy, because while we know that letters get to patients at some point, we have a high transient population. A recent study showed that about 80%, if not more, of Medicaid populations have cell phones and mobile technology and they use it for looking up things around their health care. So that's one thing that's been very exciting: leveraging texting technology for patient outreach.
PE: The other technology that we use is interpreter services. Neighborcare has patients who speak about 55 different languages. Our staff speak about 40 languages. That’s pretty impressive, but not everybody speaks 40 some languages. Most of us just speak one. So when patients come in with a question or they need to be seen, it's really helpful to have interpreter services. There's a couple of ways we do that. There's a service that we use and it's essentially like Facetiming an interpreter. It's actually pretty cool. The other thing that we can do is also contact a service for different interpreters that's purely over the phone. And then, of course, we also have interpreters in the clinics who are real people. But our interpreters speak about roughly three or four different languages, and we can't cover the gamut of the 50 some languages that our patients speak. So it's very helpful to use technology in order to address that need.
Bridging the technology gap in order to provide holistic care for patients
PE: Now, here's the technology that I would like to be developed but isn’t quite there yet. As a community health center, we also work to become a patient's medical home. That means thinking about patients in a very holistic way, that of whole person, patient-centered care. That means thinking about their medical needs, as well as their oral health needs, as well as thinking about their behavioral health needs. Right now, we have different electronic health records depending on what they're being seen for. So we have something called an electronic dental record, which is the same vendor as our electronic health record. And then we also have behavioral health on our electronic health record. But some of these things are not quite integrated the way that you would think they would be.
PE: In addition, we have partner agencies that might have services for substance abuse, for example. Patients also go to the ER, or the hospital, and all of these require different work flows to get the information that we need to best take care of our patients. What I would love to see is an electronic health record, or services that really allow us to be able to see this information in a much more integrated way. There are some electronic health records that have gotten better at this and there is the state's clinical data repository through OneHealthPort that has also been helpful with this. But there still remains a significant gap in technology for us to really provide holistic care for patients.
PM: Thank you, and I think about that from the patient perspective, too. That fragmentation is not serving them well either.
PE: No, and in fact, with medications, for example, if we don't have records from their ER, it can be very dangerous.
Integrated primary care, dental care and mental health services as the foundation leading into technology-led improvements
JL: There's a few foundational things, I think, that are worth mentioning before getting right to technology. One is the movement toward having more integrated primary care, dental care and mental health services. That's fundamental, and that's been aided by the Medicaid expansion and some of the CMS innovation programs. And I think that is a critical building block. The movement toward patient portals and OpenNotes, I think, is another important paradigm shift toward more cooperative relationships with providers. Then you need to get a certain level of digitization and a certain level of penetration of patient engagement for those things to really take off.
“So the phone is transformative, it will get more and more so.”
BJL: Now, moving toward technology, I would completely agree with Peggy that there is a device that people are carrying around with them, and it can be used to reach them. OCHIN, just for those of you who don't know, serves safety net community health centers nationwide with electronic health records, practice management, billing help, telehealth, e-consult and lots of different services to bring them up to par with the rest of the delivery system. It's a not for profit.
JL: We needed to get our membership engaged in MyChart, because Epic is one of the EHR systems that we distribute, in order for them to be able to access innovations such as OpenNotes. We were around 16% about a year ago. There was no way we could've gotten them up to now - now it's one in five, or 20% - and it's still going up, without working with the phone and having invitations sent out to them and doing things like defaulting net capacity and checking to see if the provider gave them a pin, and if not, have the system do it automatically, and then checking the numbers in the record to see if they might be mobile numbers because some of the telephone numbers listed as home numbers, about 80% of them were actually mobile numbers.
Go ahead and give them the invitation. So the phone is transformative, it will get more and more so. There'll be much more capabilities with the phone. Everything from translation to natural language processing, all kinds of tools, and I know that we'll be talking later about how can that become equitable. But that's my thought on the question.
Moving Toward Greater Equity in the Health Care System
"You can't have a relationship if there's no trust”
PM: Thanks, Josh. So we all talked a little bit about OpenNotes in our introductory remarks. I was hoping you, Joann, from a clinical perspective and perhaps you, Liz, from a patient perspective, could share some experiences that you've had that illuminate how you think OpenNotes could help move us toward greater equity in the health care system.
JE: I want to start with trust. Trust is foundational for the doctor patient relationship. You can't have a relationship if there's no trust, and many of our patients are marginalized, they fear the establishments, they don't try the establishment. When we first invited our patients at Harborview Medical Center to access to their notes, it showed them that we respected them, we trusted them, and trust is bidirectional. This was an important, I think, starting point for all of us, clinically.
“Trust is bidirectional. This was an important starting point for all of us, clinically.”
JE: Secondly, obviously everyone thinks that there are benefits from OpenNotes. I want to emphasize that I think our vulnerable patients have more to benefit from with OpenNotes and from patient portals. And I want to be very clear about that. Our patients have indescribable challenges. Incomprehensible. Some of the challenges they face are appalling. But we have found, at Harborview Medical Center, that we're helping them with the chaos of their life. They have language and literacy problems, but by giving them access to the notes, they go home and they click on it, and it gives them more time to comprehend, more time to digest and more time to think about the plan. Many of you in the audience have been at the doctor's office and it's hard to remember everything that was said. And for our patients, this has been extremely important. Many of them share the notes. I took care of a very elderly grandmother, and she shared my notes with her granddaughter, who helped interpret them.
“Black and Latino patients were less likely to be invited. You can't benefit if you are not invited, and we need to be much more careful with that.”
JE: Now, in addition is being a physician, I love doing research. And as part of our OpenNotes research, we had access to a national survey of patients from across the country. And as we expected, we found that patients from throughout the U.S. all said having access to the patient portal was important. And they all thought it was a great idea. What scared me about that data is that when we asked patients, "Are your health care professionals inviting you to use the portal?" Black and Latino patients were less likely to be invited. You can't benefit if you are not invited, and we need to be much more careful with that.
JE: Then, as an investigator, I also want to discuss some common misperceptions that are voiced when we discuss OpenNotes and vulnerable populations. Mental health, HIV and substance abuse. Thanks to our funders, we have published papers and done studies where we compare patients with mental health diagnoses who are using OpenNotes with patients that don't have anxiety, and patients who don't have depression. We found the same benefit. And in fact, those with mental health problems said it helped them to remember to take their meds more. They were taking their medications. We've studied HIV positive patients, and they think it's so beneficial that they actually were much more likely to share it with their partners. There was no increase in concerns about privacy or anxiety among these patient populations.
"I'm here because you cared. I could tell. You said you wanted to help me, so let's get going."
JE: I’ll close with a personal story about substance abuse, because the patients with chronic pain and substance abuse, everyone says, "Oh, you can't share the notes with those patients." I had a clinic patient who, every few weeks, Friday afternoon, would call. And he would say there was an emergency in the family, he had to go out of town, could he get his narcotics early? And after the third time that he called, I hadn't finished typing my notes, so I wrote in my note, "Patient called again. His mother has died and he needs to fly to her funeral." And then I said, "And I know he doesn't have three mothers." And I typed this in my note, and then I went on in my note to say, "I'm worried about him. I'm hoping that he'll come to clinic, because I care about him and I want to try to work with him to come up with a plan to help him because I think he has a problem with substance abuse."
JE: The patient read the note, and he actually came to the clinic. And he said, "Doc, you busted me. I read your note." And I just said, "I'm so glad you're here." And he said, "I'm here because you cared. I could tell. You said you wanted to help me, so let's get going." It opened up a new dialogue, and it actually made me afraid because I don't know how and haven't been taught how to write notes in the way that I think we need to. But it was really an eye-opening experience for me.
LS: Well, I love how Joann started with trust. I want to start with transparency. And we talk a lot about both of those things from an OpenNotes perspective. And from a patient perspective, I feel like sharing notes levels the playing field of what clinicians have access to, that information, and then what patients have access to. It's interesting in this world where we can look up anything online, but we can't actually look at our own health information and what's in our record. One of my favorite stats I've seen out of the 40,000 Google searches happening every second, 2,000 of those searches are health related. So people are curious and are interested in their own health. If you have access to your notes, instead of just blindly searching, because people are going to do that anyway, you could be really looking for the information most meaningful to you that potentially is coming from your own record. And that's informed by your doctor and documented, and potentially could be shared in the form of an open note.
LS: As a person living with a malignant brain tumor, I'm doing well right now, but for me, looking down the road, is a recurrence going to happen again? So for me, I know that in my case and many other people dealing with serious conditions and chronic illnesses, we move from site to site sometimes. Not everywhere provides neuro-oncology care. And not all of these health records are portable. And I know for other people living with serious chronic conditions, that we become that agent of interoperability between these electronic health records. It takes time and effort to request and receive copies of your records. And sometime there are costs involved. So there is a barrier to transferring that information.
LS: Some people living with chronic conditions may go to another health system, they might receive their specialty care one place and then their primary care elsewhere. And they want to explain what's going on when they arrive at the other location and the clinicians are like, "I don't know what you're talking about." But if they have access to their notes and their medical record and can print something out and bring it to this other clinician, that other doctor is more likely to believe what the first doctor said, because it's written in a language that they understand. So it helps translate your story, so for you to be able to say, "Well, here's what the other doctor said; they wrote it out for me," makes it easier to communicate what's going on.
“I am now the health care expert in my family for my mother, siblings and my nieces and nephews. I'm the person they call on”
LS: The question was around health equity, and I think it's important not to judge patients by their looks. We sometimes think of the vulnerable populations, we think of people by their ethnic minorities or if they speak English as a first language. And to share another personal story, I am a white person who speaks English. But I grew up in a family with a single mother, food assistance programs and without access to health care. And having access to my own health information helped me navigate the system. And now I'm passionate about it, so that's why I'm here working and learning as much as I can, and I now know more than the average patient but the environment I grew up in didn't necessarily prepare me for this.
LS: I am now the health care expert in my family for my mother, siblings and my nieces and nephews. So I'm the person they call on. My mother doesn't have a computer - no internet access. And my brother doesn't have an email address. So I’m thinking, "Sign up for the portal, and grant me that proxy access, so I can help you navigate your care when the time comes. “ As surgeon and writer Atul Gawande said, "We're all just pre-existing conditions waiting to happen." And I am like, yeah, it's so true. Something's going to happen to us at some point, so if we can be prepared to have the access to the information when the time comes when we need it, that would be awesome.