Maureen Riordan learned when she was pregnant that her daughter would have cystic fibrosis, a dangerous genetic disease that causes persistent lung infections. The Chicago mom vaguely remembers reviewing her daughter’s records on paper, rustling through reams of notes. “It really wasn’t that long ago,” Riordan says, “but it seems like a lifetime.”
Riordan’s daughter is 13 today, and over the course of her medical journey, her mother has become an expert on medical recordkeeping. She logs into several electronic health record (EHR) systems to check test results and communicate with doctors. She’s piloting a new electronic dashboard system with the Cystic Fibrosis Foundation and is excited about its promise. Although in her experience, EHRs have been far from perfect; overall, she sees promise, not problems.
Nine years have passed since Congress passed the Health Information Technology for Economic and Clinical Health (HITECH) Act, and President Obama signed it into law. The new law promoted the adoption and meaningful use of health information technology. For many patients, doctors, and family members, the transition to electronic records has been fraught with errors, slowdowns, and frustrations. Some, like Riordan, can see great value — or at least great promise — in EHRs, even during these tough transition times. Others are so fed up with EHR inadequacies, they struggle to find anything good to say about the systems.
“Note bloat,” “alert fatigue,” and a lack of interoperability are just the tip of the iceberg, according to an accumulating pile of research documenting the challenges. EHRs have contributed to doctors’ growing dissatisfaction with their jobs and have led both to less time with patients and to more impersonal interactions.
“At present, the spectacular effects of computers in science and in the secular world are not reflected in the EHR, which for physicians remains burdensome, all-consuming, and far from intuitive,” a recent Journal of the American Medical Association assessment concluded. “In fact, a measure of successful EHR evolution may be that physicians spend much less time with the EHR than they do now. De-implementing the EHR could actively enhance care in many clinical scenarios.”
“EHRs are here to stay,” says the lead author of that assessment, Stanford University’s Donna Zulman. “But I don’t think clunky technology is going to be tolerated much longer in health care. I think that we will increasingly see systems that are much more functional, save clinicians time, and harness data analytics to help doctors tailor care to individual patients.”
In 2008, only 17 percent of doctors’ offices and 9 percent of hospitals had even a basic EHR system, according to the 2016 Report to Congress on Health IT Progress, released by the Office of the National Coordinator for Health Information Technology. By 2015, those figures had jumped to 78 percent and 96 percent respectively, thanks in large part to federal financial incentives to upgrade.
Those incentives were designed to motivate interoperability and engagement, which the government called “meaningful use.” The idea was that your primary care doctor could quickly check out an echocardiogram uploaded by your cardiologist, or an emergency room doctor could access potentially life-saving information about your drug allergies. EHRs could send automated alerts when tests might be due or drugs might interact.
And many researchers were tantalized by the hope that they’d be able to use the “big data” in EHRs to conduct public health or other types of epidemiological research. Could we learn, for example, how to better anticipate and prevent heart failure, by analyzing the combined records of tens — or even hundreds — of thousands of people?
A basic element of “meaningful use” was simply posting test results online, so patients could access them themselves.
Like Riordan, many of us now log in online to check our own or a family member’s test results. Some of us can even shoot questions to our doctors that way. And many of us appear to trust EHRs more than we trusted old paper records.
A Baltimore focus-group study targeted regular patients in a diabetes clinic that had switched from paper to electronic records. The University of Maryland Medical
Center-led study found that patients preferred electronic. Sometimes, it was for emotional reasons. One patient in the study bemoaned the thickness of a paper file, which was a constant reminder of how sick the person was. “Yeah, I’m like eight inches, you know, so they have to pick all that up,” the patient said.
As a group, the patients reported feeling that EHRs resulted in fewer mistakes, like lost or misplaced paperwork, and more accurate, up-to-date medication lists.
A spate of studies in recent years suggests that such trust is not always deserved.
For example, a JAMA Opthalmology study published last year found significant discrepancies between a paper-based eye symptom questionnaire filled out by patients and symptoms recorded in their electronic medical records. One-fourth to one-third of the time, symptoms reported in those two places were significantly different, the research team found; overall, patients reported more symptoms on the questionnaires.
The research team, based at the University of Michigan Medical School, concluded that “documentation of symptoms based on EMR data may not provide a comprehensive resource for clinical practice or ‘big data’ research.”
Michael Wang, a hospitalist and clinical informatics fellow at the University of California San Francisco School of Medicine (USCF), took a different approach to studying EHRs. He analyzed the origins of more than 23,000 electronic notes written by 460 clinicians. After an EHR update, UCSF’s system suddenly allowed doctors to distinguish between cut-and-paste text, boiler-plate templated text, and text entered manually, in real-time.
Wang and his colleagues found that in a typical date-stamped note, a mere 18 percent of the words were new to that note; more than 80 percent were cut-and-pasted words entered previously and copied forward to the present time or pre-populated text from the note template.
“There’s been some frustration with the validity or fidelity of a note,” Wang says. “When clinicians are reading a note, how much can they believe it’s both accurate and up to date?”
His work only partially answered the question, Wang says. “We know we are [copying] and pasting a lot. That results in note bloat. There’s just an overwhelming amount of text in a patient’s chart now. It’s harder for us to sort through and find what’s meaningful.”
While it’s not yet clear if note bloat affects patient care, Wang says, it’s become extremely important to him to quickly see what’s new in an EHR versus what’s been copied.
Wang was in training when his hospital went from paper to electronic; he sees some value in EHR alert systems and e-ordering. But as a tech-savvy 34-year-old, he has higher expectations of technology than what it’s delivered so far. He can’t even reliably trace a person’s surgical history, either because of interoperability failures (one hospital’s system doesn’t connect with another’s) or because it takes too long to parse through so much information that has questionable accuracy.
“I think it has been a huge pain,” Wang admits.
More Frustrated Doctors
Cheryl Rathert, a health administration researcher at Virginia Commonwealth University, conducted in-depth interviews with 15 doctors and 15 nurses in specialty practices, to learn more about their use and feelings about EHRs. The study, published in Health Care Management Review last year, focused on people who were very familiar with and adept at using EHRs.
Nearly all participants highlighted at least one benefit of EHRs, such as the ability to quickly see a list of all care encounters without flipping through thousands of pages. Doctors noted that EHRs could help them get more informed about patients ahead of time, enabling more valuable interactions during an office visit.
But participants qualified their positive statements about EHRs, saying “in theory,” or “ideally, if everyone uses it correctly.” And participants mentioned far more challenges than benefits.
Increased workload frustrated 25 of the 30 participants: EHRs required much more of their time than anticipated, with endless click-through menus and checkboxes. Review of bloated records took more time, and potential time savings promised by electronic records didn’t always accrue. When upstream providers didn’t enter their data or notes on time, doctors still had to pick up the phone or wait for that information.
Participants also cited frustrations when EHRs systems went down. They bemoaned insufficient training, and noted that EHRs interfered with their interpersonal relationships with their patients. They also admitted that they found themselves using workarounds that might be frowned upon, such as saving data entry until the end of a shift instead of doing it right away.
“Roughly 60 percent of participants lowered their voices when they described specific workarounds,” according to the paper. “Many of these individuals … looked around as if to see who might overhear the conversation.”
EHRs were designed primarily for billing and insurance purposes, Rathert and her colleagues noted, so it’s not necessarily surprising that they don’t efficiently summarize a patient’s full story.
“There was near consensus that EHRs’ potential has not yet been realized,” the researchers concluded.
Reasons For Hope
However, EHRs likely will improve, say both Wang and Zulman, though the process may be slow. Many stakeholders are as full of ideas for new systems as they are of complaints about the current ones.
A simple suggestion that emerged from Wang’s work: Ensure that note fields include an instant way to discern copy-and-paste notes from real-time ones.
Zulman says she’d like to see more personalization, too, something like old-school paper records that included a patient’s photograph inside the front cover.
“I would love a health record where a physician opens it and sees a snapshot of the person before them,” the Stanford professor says. “It would be a reminder of who you are, what’s important to you. What are the challenges you face? How has your health changed over time?”
In recent years, some health records systems have created ways for patients to access their records, including their doctors’ notes. Some are exploring ways that patients can add to their own records. One pilot study at Harborview Medical Center in Seattle let patients type their agendas into their electronic visit notes to help clinicians prioritize patient concerns.
Riordan is beginning to do something similar with her daughter’s records. She says she uses a couple of kinds of EHRs. With the basic (“old-school”) one, she can simply log in online and check her daughter’s latest test result or message a doctor. She’s grateful for that communication tool, Riordan says, but she’s much more excited about the pilot electronic dashboard she’s working on right now with the Cystic Fibrosis Foundation: CF Health Check.
Through an electronic portal, she’s helping to reproduce her daughter’s entire health history online, so that she and her daughter’s healthcare providers can all begin to search for information, and, more interestingly,
“It’s called co-production of care,” Riordan says. “This will have her entire history of meds, information from nutritionists, nurses [and others].” Her daughter has even figured out how to upload her Fitbit data to CF
“So, I could point to a graph and say, ‘Look, she started this medicine at this point and look at how her lung function has improved,’ ” Riordan says. “This is very, very powerful.”
Wang uses similar language to describe the potential of EHRs. “The availability of data when curated correctly is extraordinarily powerful,” he says. However, moving forward will require overcoming both legal as well as technical challenges, Wang says. For example, artificial intelligence (AI) tools could be created that help physicians automatically filter the huge data sets they have access to. But before these tools get adopted widely, a policy framework will need to be in place for addressing what happens and who bears responsibility if the AI tool
Stanford’s Zulman, who also spends a great deal of time working with the Veterans Affairs Palo Alto Health Care System, says there are things that work well already in that system’s EHR and that might be built upon.
“Getting alerted that a person is due for an immunization or a colonoscopy or reminded that a diabetic person should be on a medicine to preserve their kidney function,” Zulman says, “is now routine in clinical care.”
With minor improvements, EHRs could also be used more effectively to help a doctor in detective mode. “Maybe you’ve got a patient who has had weight loss or shortness of breath or dizziness, and it’s not clear what’s going on,” Zulman says. “You can look over time at medications, lab values, a new condition that’s cropped up … and maybe you can look at that with the patient. ‘Look, there’s a change here. What kind of life event might have happened there?’ ”
Ultimately, Riordan says, patients can also be their own advocates. She works with her own and her daughter’s doctors to ensure she can get glimpses of the computer screen during visits — and ensures she gets face time, too. “I really believe that the next generation of EHRs will address some of the current frustrations.”
Integrating EHRs on Your iPhone
If you’re lucky, the entire course of your medical history may be documented in a single electronic record-keeping system. But often, medical information is scattered across multiple systems, especially if you’ve visited different hospitals or switched providers. Technologists see this as a problem that can be solved by streamlining electronic health records (EHRs). Earlier this year, Apple unveiled its solution for improving EHRs: an iPhone feature that will allow users to automatically download some of their health records from different providers into one central platform.
The feature, called Health Records, will be part of Apple’s existing Health app. Initially, it will only be available to iPhone users with iOS 11.3 beta who are also patients at one of 12 participating hospitals throughout the U.S. Those who opt in to Health Records will be able to see their latest test results, prescribed medications, upcoming procedures, and other clinical data, alongside health information that smartphones may already be capturing, such as exercise and weight.
“This opens up a whole new collection of capabilities that, frankly, we just didn’t have before, and [that] are much more patient-centered,” says Peter Greene, the chief medical information officer and
an associate professor of surgery at Johns Hopkins Medicine, one of the hospitals testing the iPhone feature.
By aggregating everything in one place, the Apple Health Records feature will make it easier for patients to access and take control of their data. For example, patients could set up automatic reminders for when to take medication, Greene says. They could use the data to do pharmaceutical comparison shopping or decide to share their information with doctors or caregivers.
Having this medical data stored on their iPhone may entice people into becoming engaged in their own health care, says Enid Montague, a health informatics professor at DePaul University in Chicago. But it could also make their data less secure, she says. Although the Health Records data will be encrypted and stored locally on the iPhone, and patients will have to approve who they share information with, it’s still unclear who will bear the responsibility in the event of a privacy breach.
And, at least for now, the information that will be available in Apple Health Records will be no different from what’s already available on patient portals like MyChart, Montague cautions. The main difference is that most portals are based on older software that doesn’t support the sharing of information between doctors and patients, or even among other doctors.
Patient advocate Dave deBronkart (“e-Patient Dave”) says Apple’s initiative is a step in the right direction. It may be particularly helpful for seriously ill patients who may need to coordinate their care among multiple providers, he says. But whether the Apple Health Records feature has any value for patients beyond that remains to be seen.
“It just gives a tiny slice of what doctors and nurses can see when they log in [on their end],” deBronkart says. Patients should have access to all of that information, including the progress notes that doctors jot down during and after each visit, he says.
— Knvul Sheikh
Here are a few companies whose products aim to help patients gain control of and organize their medical records.
CareSync: As part of its mission to facilitate coordination of care among patients, caregivers, and healthcare teams, this Tampa-based company does the legwork to compile a patient’s health records into one easily sharable document. The service is $129 for a one-time health history. (caresync.com)
Share Everywhere: Epic, the company behind the most widely used electronic health record (EHR), has recently released Share Everywhere, a tool that allows patients to share their medical records from a smartphone with any clinician in the world with internet access. The service is free for Epic customers. (epic.com)
PicnicHealth: Similar to CareSync, PicnicHealth performs the tedious task of tracking down all of a patient’s health records and compiling them into one secure, centralized location. The process takes roughly two to three weeks and costs $299 for a complete medical history retrieval. (picnichealth.com)
ZibdyHealth: The San Diego-based start-up offers a free suite of tools that allows patients to import and consolidate health data from multiple EHRs, track medications, and help patients and their caregivers transition from one care setting to another. The app’s sharing feature lets patients share as much or as little data as they want with doctors, families, and caregivers. (zibdyhealth.com)
— Katherine Lagomarsino