Much of the attention around the OpenNotes movement, which gives patients direct access to parts of the physician documentation in their electronic health records (EHRs), has been around private health systems. But what about OpenNotes, in the context of the public hospital-/safety-net hospital-based healthcare system? Don’t the patients in public hospitals and clinics also deserve enhanced access to their own healthcare information?
The answer to that question, according to leaders in the Los Angeles County healthcare system, is a resounding “yes.” Los Angeles County’s four hospitals and 18 clinics are moving forward to provide increased patients’ access to their own health records, within the broader context of efforts to engage patients in order to enhance their health status.
Indeed, leaders at that county healthcare system have made a commitment to engage their patients far more fully in their care and health, recognizing the complexities of doing so when engaging populations facing issues around poverty, transience, social instability, and other challenges in their lives.
At Los Angeles County Department of Health Services, Anshu Abhat, M.D., M.P.H., the director of patient engagement in information technology, has been helping to lead a patient engagement initiative, one in which information technology has proven to be a vital facilitator of progress in this area. Dr. Abhat, a general internist who continues to practice primary care medicine at Harbor-UCLA Medical Center in Torrance, and in Harbor-UCLA’s outpatient clinics, and who teaches residents there in both the inpatient and outpatient settings, has been working with a variety of colleagues across the public hospital system to move things forward around IT-facilitated patient engagement. She spoke recently with Healthcare Informatics Editor-in-Chief Mark Hagland about this initiative, and its implications for patient engagement efforts healthcare system-wide. Below are experts from that interview.
Your team is a somewhat virtual, project-specific one?
Yes; my team was blank in the beginning. I work with a variety of different individuals in different areas within the system. There are the IT folks—I collaborate with the CMIOs at the different facilities, including the one over all of DHS, and also IT analysts; I also work with the local operational folks, including the primary care workforce—the primary care physician leaders, and specialty leaders. I also work with our CMO for the county, and more recently, have been working with the folks who handle the patient experience.
What are the backgrounds of the members of the patient experience team?
There’s one designated patient experience person at each of the hospitals. They’re generally not clinicians; some have more MBA backgrounds; others have had operational backgrounds, for example, one was an interim COO.
What areas have you been discussing with colleagues, per the patient experience, and how that might be enhanced?
There’s been a big focus on the social determinants of health side of things, and there are a couple of programs that really have formed our work. There have been a couple of grants, one around Whole Person Care. [As the California Department of Health Care Services notes on its website, “The overarching goal of the Whole Person Care (WPC) Pilots is the coordination of health, behavioral health, and social services, as applicable, in a patient-centered manner with the goals of improved beneficiary health and wellbeing through more efficient and effective use of resources. WPC Pilots will provide an option to a county, a city and county, a health or hospital authority, or a consortium of any of the above entities serving a county or region consisting of more than one county, or a health authority, to receive support to integrate care for a particularly vulnerable group of Medi-Cal beneficiaries who have been identified as high users of multiple systems and continue to have poor health outcomes.”] A grant is being administered by the state of California, with pilots focusing on the most marginalized Medi-Cal patients—homeless high-risk patients, patients involved with the justice system, mental health high-risk patients, substance-abuse high-risk patients, high-risk perinatal patients, and medically high-risk, high utilizers of healthcare. That’s an initiative run by a very innovative team here. So that’s one initiative going on.
How do you interface with them?
They’re fairly early on in working on the grant, about a year in, and they’re working in hospital settings, clinic settings, and in the community, around getting people more involved in their care. I’m starting to explore that with them myself. Right now, I don’t have a direct interface, but they’re doing a lot a work—a project called CHAMP, where they’re creating an EHR that spans all those areas of high risk, beyond the purely medical; I don’t think that’s been done before, so that’s innovative. And we have other folks working on system-wide social-determinant screenings, to better understand patients as they walk through the door. We need to understand which interventions will matter, and the EHR [electronic health record] can help us understand stratification of patients, and where we should focus our health efforts.
What has your particular focus been on as an individual?
It’s been a bit more of a technology focus; a lot of my effort has been around the patient portal, and part of that has been increasing the transparency of data to patients within that. And the big initiative I’ve been involved with has been the launch of OpenNotes. We launched the first phase of it on January 16. The areas we’ve launched have been inpatient, so most of the inpatient documentation excluding progress notes, which tend to be messy, and the emergency department notes, and outpatient specialty notes.
So patients can see all those, since mid-January?
Yes, that’s correct.
How has it gone?
It’s gone well. Like any of these efforts, it took some initial education and work at the beginning, but we haven’t had any issues.
How many patients have accessed their notes so far?
Looking at our stats, in the last month, we’ve had about 4,000 patients who’ve accessed notes.
How many patients ultimately will do this?
I think the majority of patients engaged on the portal, will end up accessing notes. Right now, we have about 30,000 patients on the portal. That’s a small percentage of our total impaneled patients, 500,000 impaneled patients. We vary in terms of the volume of patients who are on our portal, from across our total population—between 6 percent and 25 percent, but looking at the clean numbers, it ends up being about 10 percent who are on the portal so far.
Anecdotally, what have you been hearing from physicians and patients about their experience of OpenNotes?
We haven’t had a lot of discussions directly with patients, but they’ve been largely self-directing. And in terms of physicians, some physicians were initially cautious, but things have gone well. And our oncology group, for example, has been one of the specialty groups that has been most interested in this. One of the challenges you always face in safety-net systems is enrollment, so we’re working on improving our enrollment across the system. We’re now in a project focused on human-centered design, to look at the ongoing efforts across different facilities, and to help us guide them through standard processes. We’re also looking at literacy, language, executive function of smartphone use, etc.
A lot of our patients have smartphones in their possession, but a lot of patients may never have an email address, and this requires that you have an email address. So we have a team of health educators; they are in a lot of our clinic facilities, doing a lot more facilitation with patients, to help them not only sign up but really understand the tool and navigate through it. We also have a group of peer mentors who are actually patients; a lot of them are spinal cord injury patients at our rehab centers, and they work with the hospitals to guide other patients as peers.
Is it because those patients have the available time to participate in that, as they recuperate?
Yes, and they’re also employed by the hospital. At Rancho, they have the peer mentor program. They decided it would be important to have a peer-mentor group. Rancho Los Amigos Medical Center, in Downey.
Much of the high-profile progress of OpenNotes has been in private health systems with mostly middle-class populations. What does the OpenNotes phenomenon look like, from the standpoint of a safety-net health system whose majority population is disadvantaged?
There are challenges, and they’re not well-understood. But there is some evidence in the literature that patients who face barriers, tend to increase their trust with clinicians, when they have notes shared with them. They tend to be patients of lower economic status and also limited English proficiency. So the idea is, sometimes in a public system, this concept of trust can be variable, because of a lot of the barriers that exist—barriers on all sides. So I think that this idea of promoting trust by promoting transparency—that’s where this movement has roots in the safety-net community.
And it’s a very fair question—when you present a Spanish-speaking patient with a note in English, what do you expect will happen? And that’s a very fair question, and we’re actually doing formal research on that. But the basic concept is this: what happens a lot of times is that translation services are variable, what patients walk away with, is variable. And if you can give someone the basis of that communication and of understanding and interpreting that, that’s what we’re exploring.
So some of these patients are already engaged with interlocutors, such as adult children, for example, who are bilingual; so this creates greater transparency?
Yes, the idea is building trust, and increasing the individual’s capacity empowerment around their health, with the understanding that this is something that needs additional study. At the same time, this is your information, and you have the right to this information, and we want to facilitate that as much as possible, and learn how this can help with your health and well-being.
So you’re trying to change the dynamic for patients who come into the healthcare system disempowered to begin with?
Yes, and simply the ability to access this information. If this information comes from your body, it should be available for you to understand. And translation is a big issue in general, and if we ask, how is that relevant to IT? You can imagine a translation tool built in, reading these notes, and giving the patients a translation; and there is some work being done around that. But, absent that, the first layer is saying, this is your health information; you decide who your community is. And we encourage people using proxies, if they are comfortable using them to help them. I have some elderly patients who speak Spanish, and I speak Spanish as well, but often, it’s their adult daughters who serve as caregivers and proxies for them; and with IT, we can actually start to create some formal relationships here. There is a bit of a double-edged sword, because it has to be the right person. But we’re actually identifying those individuals formally, in the system.
What have been the challenges, opportunities, and learnings, for you and your colleagues in this, so far?
Initially, establishing the patient portal, creating OpenNotes, putting radiology reports online—sometimes, these things are not the right place to start, in a safety-net environment. I’m working on text messaging now. In the safety-net environment, text-messaging is a really good place to start. The text-messaging can now feed the portal, and the portal can feed more complexity; so that’s one area. I’ve also done some work around patient education, so I’ve learned about the standards of patient education, and I’m realizing that all of these are quite interconnected: patient education, delivering patient education in relevant, usable ways, like text messaging; and making sure it’s relevant in a literacy perspective, and a language perspective. It’s not like, this is the tool, and everyone can use it; it’s about how you create an environment of literacy around patient care delivery, and text-messaging is a tool to help facilitate that.
What should clinicians, clinical informaticists, and pure IT people, be thinking about, as they move forward with this, around complex populations?
Keep in mind patients’ priorities and preferences, as they manage complex processes. In other words, make all of this as seamless and convenient as possible. The first thing we did around OpenNotes was, we went around and surveyed patients waiting in lines, and found that they were waiting long periods of time to access their doctors’ notes; it was taking time away from their work and families to do this. So whoever you are, when health feels like two extra steps in order to do this, it’s hard when you have to go out of your way to go through processes to support your health. So we need to bring that straight to the patient, and really center our interventions around the patient, or the parent of the patient, and just make it easy.
And the big focus in Los Angeles County, through some of these different initiatives, is taking this traditional model of healthcare delivery, and step back from it and think about other ways to deliver care. We’re doing a lower-tech version of telemedicine with phone visits, decreasing the amount of time they need to drive and park, to access clinic visits.
So the core of all this is, do what’s right for your community, correct?
Yes, absolutely. As we step back from the IT piece, it’s, let’s understand our community, let’s use IT to help tailor things for our patients. So, do a technology assessment, do a literacy assessment, do those things, and let that inform how to best reach people to their convenience.
And it’s helpful that nearly everyone has smartphones, even disadvantaged patients?
Yes, but what you find out is that not everyone can use them in the way you’d think. I’m a leadership fellow with the California Healthcare Foundation—it’s a two-year executive leadership program—and I’ve just done a lot of interviews with patients, and I’m finding out who and who cannot use these smartphones for a variety of purposes. And you start to understand, we really have to capture this information.
