Steven Lane, M.D., clinical informatics director for privacy, information security and interoperability at California-based Sutter Health, has worked on interoperability issues for more than 15 years. Yet he had an eye-opening experience preparing for an upcoming surgery in a different health system. At the pre-operation visit, the nurse could not access his records from his home hospital, “even though I know very well that our systems are connected," he said. He also filled out some forms through the portal of this organization before the visit, and the nurse couldn't find that data either, so she asked him those questions all over again.
“It was very interesting, just to see it from that patient role,” said Lane, who was moderating a discussion at Digital HIMSS22 about interoperability issues beyond standards and technology. He was joined by William J. Gordon, M.D., an associate physician at Brigham and Women’s Hospital in Boston and director of solution and experience for digital care transformation at the Mass General Brigham healthcare system, and Victoria Taise, M.S.N., Ph.D., director of research science at NewYork-Presbyterian Hospital and assistant professor of health informatics at Weill Cornell Medicine. She was appointed as the informatics expert to the National Academy of Medicine’s Future of Nursing 2030 Committee to envision the nurse’s role in using technology to tackle disparities, promote health equity, and create healthier communities.
Using his own personal anecdote as a starting point, Lane asked the panelists what they see as the role of people in this interoperability challenge that we're trying to solve.
“I think there are a lot of providers who just aren't aware of how much more access to data they have now than they had even a couple years ago,” Gordon said. The thinking was that if a patient came from an outside hospital or another institution, they wouldn’t have any records, but that is becoming less valid of an excuse not to look for that patient data, because it's there, especially regionally, he added. The standard of care should be that we can access most data for patients, especially in our region. Gordon said clinicians have to create more demand. “What I mean by that is when you don't see some data that you expected to see, create some noise or reach out to your health information management office. That type of demand creates urgency and a real clinical imperative for folks to understand that these issues are real.”
Taise stressed that we've made great strides with interoperability, and it is not all a technology problem by any means, but she added that clinicians really need to be involved on the front end in technology product design. “We need to ensure that our patients and clinicians are involved as these products are being designed and developed, and that's really not happening right now,” she said. “Shifting that paradigm a bit is going to be very important, especially that patient piece, because as our patients become more educated around data-sharing possibilities, I think they are going to be great influencers in making sure we get this right and figure out some of those barriers and struggles.”
Lane noted that a lot has been said about the role of competition in limiting interoperability, whether it's competition between health IT vendors or between provider organizations. There has been a sense of creating walled gardens where having the data or having a set of tools to support data sharing keeps people within a certain system or within a certain vendor’s purview. This seems to be less of an issue today with the 21st Century Cures Act and the information-sharing requirements on the part of CMS to make data available using new technical standards. But he asked the panelists whether competition was still an issue, and how we can get past that to interoperability?
Gordon responded that one of the byproducts of the pandemic was that it really accelerated a lot of work in this space. “Communication channels between hospitals in my area that had never been electronic, or automated, all of a sudden were online in a couple of weeks. People are starting to recognize that we really do need this. I'm very optimistic that as 21st Century Cures rolls out, as regulations become just de facto part of the standard of operating, we're going to see more and more that competition doesn't help patients. And we really should be as liquid with the data as possible. And if systems don't do that, I think what will happen is patients will take their data and go somewhere else.”
Lane stated that increasingly patients are accessing their data from providers, labs and other sources. In his own practice, he is seeing an increasing desire on the part of patients to be able to contribute to their health data. “We've got patients increasingly wanting to send us data about their blood pressures, their blood sugars. Patients are using apps, and there's more and more patient-generated health data. But I think we've been very slow to see that coming into the workflow of clinicians, be it in the hospital or the ambulatory setting. He asked the panelists what role do patients play today, and what role should patients play in the future in in helping to drive interoperability?
“In work that I've done with adolescent asthma patients, they are expecting to share their data with providers,” Taise said, “so I think it's no longer a nicety, but it is going to be an expectation. Thinking about the workflows, is the sharing of the data happening in an active or passive manner? Where will it be located? Do we need to put all of those data into the EHR? Is there some sort of platform we can use to aggregate those data and present information to our clinicians with meaningful insights? I think this is a huge area of work. But thinking about it from the patient's perspective, and asking what they're looking to share and how they want to share it is really going to help us move the needle in this area.”
Gordon agreed that patients are going to expect that as healthcare delivery moves outside of the four walls of the office, the data that's generated, as part of that is going to be seen by their care team. “One of the challenges in terms of aggregating data and workflow is that providers don't want to see one blood pressure every day from every patient,” he added. “That’s hard to interpret. It's a lot of data. As data starts coming in through these platforms, through EHRs, through things like Apple, which is now working on writing back to EHRs, I think we have to be thoughtful about how we aggregate and deal with that data.”
For example, Gordon said, one of the chronic disease programs at his health system is a hypertension management program. Patients have blood pressure cuffs at home, and their cellular data comes back into the health system automatically as patients check their blood pressures, but they average it over seven days. “That is actionable,” Gordon said. “That's key, because then we don't have providers looking at every single patient every single day. And it's going to be really important as the data pipes open that we have processes to deal with data that's out of bounds.”
Lane asked, with the increase in virtual care and hospital at home, how can we start to assure that all of the data from the care that's being provided in different venues comes together in a way that it can both be available to the patient and to the entire care team, as people access these different sorts of services?
“One of the most important components of this is frame-shifting,” Gordon said. “We all still think of the hospital, outpatient, nursing home as these discrete entities of how we deliver care, with the home increasingly being another one. What's happening is the lines are blurring. We have hospital-at-home programs. We're managing chronic diseases at home without outpatient visits, so the home is becoming not only a distinct entity, we're actually blurring into the other ones. I think, if we frame shift and think of the home as truly another place for delivering care, it's also integrated into the others, then our expectations of how we interoperate from an EHR perspective, all of that should follow to the home like it is another office, like it's another ambulatory setting. Let’s strive to have the standard of data collection, and communication and access of data be the same standard that we deliver in the hospital or in the clinic or in the nursing home for trying to model that care delivery environment in the patient's home.”
Taise said that we often say interoperability efforts are patient-centric, but they really aren’t, they’re setting-centric. “Now that we are incorporating these various settings, we need to be mindful of that. I think the interesting part about care at home is that it also begs the question of what our new care models will look like. They are probably not going to look the same in a decade. Who are the individuals that are caring for the patient in the home? And who is collecting the data? I think there are a lot of different components, we need to start considering and think about differently.”