Everybody's talking about accountable care nowadays. But providers aren't the only ones who need to be held accountable as we push off into the uncharted waters of care coordination and payment reform. The folks on the other side of that storied and sacred doctor/patient relationship have important responsibilities too.
It’s a refrain one hears over and over again, from the National Coordinator on down to smallest software start-up company: Only once a critical mass of people start thinking more about and taking more responsibility for their own wellness, can the health system transformation toward which we're all striving really come about.
The hard part? Making sure that actually happens.
No surprise, patient engagement was a big topic of conversation at HIMSS12 in Las Vegas, earlier this year.
The proposed meaningful use Stage 2 rules, delivered like Moses' stone tablets to the conference's eagerly waiting throngs, focus intensely on open access, calling for patients to have the capability to electronically view and download their health information, rather than needing to request their records, and requiring that providers have secure electronic messaging to communicate with them.
National Coordinator Farzad Mostashari, MD, in his keynote address, spoke passionately about this emerging paradigm – lauding what he called, "fundamentally a return to the ethos of medicine, where the relationship between patient and provider is more than the relationship between shoe seller and shoe purchaser. Where we don't just wait for the patient to walk through the door and say, 'How can I help you?' Where we have a responsibility to the population of our patients."
The age of "engaged and empowered patients" is upon us, especially with smartphones and ubiquitous access to information "changing everything," he said. "Patients now have the tools at their fingertips."
Meanwhile, on the show floor, hundreds of companies in booths gargantuan and small were doing their best to drive that point home, showcasing their EHRs, patient portals, personal health records, and a near-limitless array of smartphone and tablet-ready health and wellness apps. But how many people are ready to use them?
Starting to get IT
Truly getting patients to take charge of their own health "means undoing the hundred years of patient passivity that we have trained people to live," says Eric Dishman, director of health innovation and policy for Intel's Digital Health Group. "It's a big challenge." Not to mention, "it's not enough to engage patients with their health," he adds. "To do that first they have to engage with the technology – and they have to want to do that."
Recent polling has shown that, however hesitantly, more patients are starting to appreciate technology's potential to impact their own care. A survey published in February from the National Partnership for Women & Families showed that the 26 percent of respondents who had online access to their medical records were more supportive of health IT than those who didn't.
That's a good sign, said NPWF vice president Christine Bechtel, since "for health IT to deliver on its promise, consumers must support it."
But another study from February, sponsored by Deloitte Center for Health Solutions, showed that physicians are still badly lacking when it comes to using technology to engage their patients. Barely 20 percent of docs are providing online scheduling or test results for their patients, and just 6 percent are using social media to communicate with them, Deloitte found.
One strategy, then, may be to find ways to engage patients with health IT that don't necessarily involve physicians. On that front, at least, things are going gangbusters – perhaps even too much so.
No question, the burgeoning mHealth movement and its focus on consumer apps has "certainly brought a lot of attention to the possibilities of patient-centered health," says Dishman.
Nonetheless, "I'm a little concerned about the way it's going in that regard, though. Because there's a lot of hype and very little reality. People will say to me, 'There's 65,000 apps for health in the iTunes store.' But I say, 'Twelve-thousand of those are diabetes apps, maybe six of them have ever been downloaded more than once and two of them have been used continuously,'" he says, exaggerating only slightly.
Like it or not, when most people browse the iPad app store, they're downloading Angry Birds and Words with Friends.
"You never see anything in the top 10 list of most downloaded anything that's a healthcare app," says Dishman. "Directionally, it feels like there's all this attention, this patient-centered hype. But what no one's done yet is fundamentally change the role the patient is supposed to play, in terms of doctor-patient interaction."
On the record
When Google Health, announced that it would shut down this past summer, many observers took the opportunity to pronounce the death of personal health records in general. A solution in search of a problem, many called them.
Dishman still believes in the technology. But he does hope the Google experiment signaled the "death knell for first-generation PHRs."
No one wants to deal with "ugly databases," says Dishman, who sits on the board of Dossia, the personal health record established by a group of Fortune 500 companies, including Intel, for their employees. "Where they start to get interested is where they move into social media. I think there will be a lot of uptake with that."
For example, "someone with a chronic disease, or some form of cancer, sign them up and immediately there are five or six people who fit a similar profile, who are six months ahead in this disease, and they're there to help pull me along."
That's the idea behind products such as the new Collaborative E-Care Management platform, developed by SAP. Seeking to extend care beyond the provider's walls, the technology makes use of the cloud and mobile devices to help connect patients with their doctors and, crucially, their peers – enlisting family, friends, coaches and others to help support smoking cessation, say, or weight loss.
It's "giving the patient a reason to engage," says John Papandrea, senior vice president of SAP's healthcare industry business unit, beyond the amorphous notion – "my healthcare will be better" – upon which many more static PHRs depend for participation.
By tailoring the program for each individual, assigning the patient with "tasks and activities," and also offering the "optional ability for the provider of the solution, payer or provider, to have a loyalty-style program" such as gym memberships, coupons or discounts, SAP hopes to solve the participation issue.
"There need to be the right motivations put in place for people – as well as providers – to take part," says Papandrea. "It's not just about technology."
Easier said than done
Unfortunately, it's still true that "by and large, people do not care about their healthcare until they have to, either for themselves or a loved one," as Chilmark Research analyst John Moore notes on his blog.
And even then, "it may be far more than they are capable of to set up and maintain a PHR These systems are still far too hard to create and manage, let alone trying to get doctors and hospitals to feed complete records and updates into them in some automated fashion."
Jeff Donnell, president of NoMoreClipboard, agrees. "Make it easy for the patient to give their stuff, put it in the PHR and share it," he says. After all, who wants to upload five years of medical records from this doctor, a stack of papers half-inch thick, and then three years worth of medical records from another doctor?
Ease of use is the key to more widespread PHR adoption – and now is the time to follow through on that promise, because Donnell has noticed interest, in the concept at least, picking up, even in just the past year or so.
"It's really been dramatic," he says. NoMoreClipboard has spent "five or six years really feeling like we're doing evangelization, trying to convince people that patient engagement, patient portals and personal health records make sense," he says.
Suddenly, "it's like somebody flipped a switch. Now, everybody wants to talk about it."
And not just policymakers and vendors. Joe Q. Public is starting to come around. "As the cost burden shifts to the consumer – we're paying bigger deductibles, higher co-pays, higher premiums – you start to pay attention," says Donnell. Now we just "need some tools to help" capitalize on this "perfect environment for patient engagement."
With products such as cc:Me, and collaborations such as the new iMPak Health journals, NoMoreClipboard aims to do just that.
The former is billed as a "medical record mail service" a secure direct way for clinicians to share health information with patients in a standardized format. "The patient can go to the doctor and say, 'Here's my cc:Me address,'" says Donnell, thus easily enabling the the physician to send a copy of the patient's continuity of care document (CCD).
The iMPak Health Journal, developed in conjunction with Cypak and Meridian Health, is aimed at technology-averse populations such as the elderly or the underserved. The small device has an extremely simple interface, through which health data can be entered and transmitted to mobile device and shared with a personal health record and a clinical portal.
"Tens of millions of Americans are never going to use a computer," notes Donnell, who says he gets tired of hearing excuses against personal engagement – "our patients won’t do that" – because folks happen to be seniors or safety-net populations. "We've found that if you give people the right tools, encourage them, give them a little education, the patients who need it will generally do something," he says.
The long engagement
Patient engagement can take many forms. It doesn't have to be dependent on technology. In fact, sometimes it's better if it's not. Take, for instance, the outreach to and enlistment of disproportionately expensive medical "hot spots," as shown by Atul Gawande, MD, in his much-read 2011 New Yorker article.
American Public Media's Marketplace recently spotlighted one such program in Philadelphia, which targets hospital readmissions by assigning community health workers to get demographically similar citizens to invest more into their own care – thus helping disprove some providers' excuse that, "there's nothing they can do to change how people behave once they leave the hospital."
"There's a lot of talk about patient-centered care," lately, but oftentimes it doesn't feel very patient-centered," says Dishman.
But make no mistake, he says, "for all this talk of bundled payments and ACOs, until the patient is part of the care team, and gets some reward, I don't think you're going to change a lot." Without that fundamental shift, he adds, very few of these multitudinous programs focus on "prevention and early detection and wellness and consumer engagement" are going to bear much fruit.
Even as he cautions that "this is the beginning of the transformation, not the end," Dishman does see engagement happening.
Donnell agrees. "This is all new," he says. "It's not like you're just going to flip a switch and all this data starts to flow." But the appetite exists. It's just a matter of tapping into it. "You've gotta find those early adopters – and believe me, they're out there."
One thing is for certain, though, he adds. "The patient bears responsibility. They've got to own up to their end of the bargain."