The 19.5 million residents of New York State will soon have access to heaps of their own health data — the results of every blood test, the details on every prescription — courtesy of a groundbreaking web portal that'll make obtaining medical records as easy as online banking. At least that's the promise of a state-backed initiative that hopes to set a precedent across the country.
Called "The Patient Portal for New Yorkers," the venture marks the first time a US state has tried to share comprehensive, digitized medical data, provided by doctors and hospitals, with patients. It's also an ambitious attempt to succeed where private efforts have largely failed: Google, for instance, last year shut down its own patient portal, Google Health, after the venture didn't gain traction with users.
"For patients, the applications here are going to be huge."
"We're arguably the most advanced state in the country working on this," Paul Wilder, the vice president of product management at the New York eHealth Collaborative, a nonprofit working in conjunction with the New York State Department of Health on the venture, told The Verge. "For patients, the applications here are going to be huge."
In part because those behind the project "didn't know what to build," they decided to crowdsource the portal design. This past Tuesday in New York City, the top nine designs were unveiled, with a winner to be selected in mid-May. That design will serve as a framework for the final portal, though "anything from any contestant can be used in the final product," Wilder said. "We want to use the best of the best."
A veritable playground for health aficionados.
A glimpse at demo videos from finalists, some of which are included in this story, suggests that the initiative aspires to create a veritable playground for health aficionados — and act as an important resource for those with chronic illnesses. Over soundtracks of soothing jazz, the demos promise a treasure trove of possibilities: patients will track prescriptions, read appointment memos, send notes to doctors, and even log workouts, blood pressure, and other personal health metrics.
Officials with the project say that a first iteration will roll out to New Yorkers within a year. But when it does, questions persist about what information, and how much of it, users can actually expect to see.
On its face, the implementation of New York's patient portal seems simple enough — mostly because the backbone that'll feed it with data already exists.
New York has spent several years developing what's called a Health Information Exchange (HIE) to allow medical providers to share patient info amongst themselves. "HIE is like a Google for patient information," Wilder explains. "A provider can see what other work has been done, what prescriptions a patient has been given, or what previous test results they've had. It's a great coordination tool." In New York, doctors can even trade direct messages through the service.
Right now, New York's HIE is divided geographically into 11 zones — meaning medical providers who opt into HIE can trade information and communicate on a regional level. Last year, as a stepping stone to the patient portal, officials announced plans to unify those exchanges into one statewide HIE, a process that remains ongoing.
"A user-friendly interface that [patients] want to interact with."
The patient portal would harness all of the data collected by that HIE, and open it up to patients "in a user-friendly interface that they'll want to interact with," Wilder said. Eventually, the portal will also allow patients to input some of their own information, like workout history or weight, though "we still need to figure out which data from patients will be reliable, and a good way to separate it from clinical data," Wilder added.
By relying on a backbone of clinical info, the New York portal has the potential to succeed where ventures like Google Health haven't, experts consulted by The Verge said. "Google tried something similar, but they didn't have that connectivity to the clinical side," Shahid Shah, a software consultant who specializes in health IT, said. "Without that link, the onus on the patient to input all of their own data is really quite high ... and there's a persistent question about how to make that kind of database profitable."
"New York is really taking the bull by the horns."
"New York is really taking the bull by the horns," Shah added. "If they succeed, they'll be setting the groundwork for everyone else to understand how this can actually work."
If only success was going to be easy. New York might be making a bold foray into open-access patient data, but significant hurdles remain before this kind of portal will actually offer any real benefits to users, experts said.
Arguably most important: medical providers have yet to jump onto the e-health bandwagon with significant enthusiasm - around 57 percent of physicians nationwide use electronic records — and even fewer are linking those e-records to HIE networks. By Wilder's own estimate, "around 80 percent of hospitals, 50 percent of clinics, and [less than 20 percent] of specialty care providers" in the state are currently using the HIE.
"What's coming through a portal is not gospel."
In other words, that vital backbone remains incomplete. "This entire process assumes that the foundations of the database are actually working," Ateev Mehrotra, MPH, a health care policy analyst at RAND Corporation, said. "I would be skeptical about whether that's actually fully formed." Furthermore, Mehrotra said, questions remain about just how accurate digitized information actually is: e-records are often hampered by inaccurate and outdated data, "and stuff stays in the system and it doesn't get corrected," he said. Those inaccuracies are often confusing for patients, and in worst-case scenarios, they're downright dangerous. "There is a hyper-enthusiasm and overconfidence that troubles me," Scot Silverstein, MD, an expert in medical informatics at Drexel University, said. "Patients need to know that what's coming through a portal is not gospel."
"Vendors themselves have become data merchants."
Convincing medical providers to hand their data over to a statewide system is yet another problem. Largely, that's because many of them rely on private vendors to operate their e-record systems, and those vendors aren't always enthusiastic about opening up a bounty of patient information. "Vendors themselves have become data merchants," Silverstein said. "They have an incentive not to provide patient data, or at least to make it very costly."
And then there's the issue of security. Anecdotal evidence points to myriad instances of e-record systems being breached at medical centers across the country. In one 2010 instance, 1.7 million patients were affected by the theft of electronic health records from a network of hospitals in the Bronx. But New York State has since tightened its security regulations, Wilder said, and the patient portal will be "encrypted and secure," and include "two factor security" for both providers and patients.
Combined, this bevy of challenges suggest that any statewide patient portal deployed in the near future risks being something of a mess. Some patients might log on and obtain a wealth of data, while others might see gaps, errors, or confusing inconsistencies. "I'm skeptical at the idea that this can have a real impact on patients right now," Peter Stetson, MD, associate professor of clinical informatics at Columbia University, said. "I haven't seen [the portal], but it sounds like a lot of confusion."
"The patient should be the sherpa of their own information."
Officials behind New York's portal admit they haven't solved every challenge just yet. At least where gaps in medical data are concerned, Wilder notes that patients will be able to upload documents they obtain from doctors who use e-records but don't participate in the HIE. "Our goal is that the patient gets all of the data," he said. "The patient should be the sherpa of their own information."
Whether patients can initially access all that data, in a way that's user-friendly and secure, remains an open question. But despite the vexing challenges the project faces, it might at least offer more lessons in what to do — and not to do — in the future. "New York is showing thought leadership where it matters," Shah said. "These conversations wouldn't be happening if they weren't giving this a shot."