Melding technology and health reform for ‘patient empowerment’

WASHINGTON--Lygeia Ricciardi sits at the intersection of federal health care reform and the digital revolution. Her job, in a nutshell, is to transform lofty and complex public health goals into easy-to-use, Internet-ready "patient empowerment" tools.

Ricciardi's universe is a place where an elderly woman can use a wireless scale to weigh herself each day, with the data automatically transmitted to a home computer where it pops up as a graph that shows gain or loss over time. It's a place where a low-income man at risk for diabetes can get a text message connecting him with a nearby doctor who will help monitor or manage his condition, before it spirals into a dangerous and costly health care episode.

And it's a place where physicians will be required to provide patients with secure, online access to their health records, bypassing the current morass of privacy-rule red tape and photocopying copying fees that patients often face when they ask for such data now.

"There's so much cool and fun stuff out there," Ricciardi said, "a set of tools that can really shift health care."

Ricciardi, Lygeia

Lygeia Ricciardi: 'A set of tools that can really shift health care'

Ricciardi's voice betrays a kid-in-the-candy-store sense of excitement as she talks about the thousands of new smart phone applications and other social media tools now at the disposal of providers, patients, and policymakers. But it's the end goal, not just the means, that's really driving Ricciardi and a new federal initiative her office is leading to create more "empowered patients."

In January, Ricciardi became the first national policy advisor for "consumer e-health," part of the Department of Health and Human Services' health information technology office. She's working to bridge the divide between the traditional health system and a nascent world of digital health tools for the public, such as smartphone applications, text reminders, sensors, and online communities focused on particular health conditions.

But a lot about her job might sound wonky and out-of-reach.

What is an "empowered patient" anyway? And how many people can figure out how to use--or afford to buy--a wireless scale, not to mention the laptop it's supposed connect to?

Ricciardi acknowledged the hurdles that she and other policymakers face as they seek to turn this vision of Internet-savvy, pro-active patients into a reality--and bring doctors and other health care providers along for the ride.

"It's a cultural shift on the part of both patients and doctors and policymakers too," she said, when asked about the resistance that doctors, for instance, may demonstrate to "empowered patients" who have thoroughly researched their own conditions and expect to have a full-throated voice in their treatment.

"There are certainly early adopters--people who are working with very engaged patients and who report this is a really terrific thing," she said. "But then there are others who are reluctant to either implement new technology in the first place," or who are hesitant to use it in a meaningful way that pulls patients into the health care decision-making circle.

"There's going to be some friction along the way," she said. "But ultimately what we're driving toward is having the patient and the provider on the same side, working together toward better quality care... [So they] jointly go through the process to figure out not just what a diagnosis might be, but also in making treatment decisions."

The use of technology in the move toward greater patient engagement is vital, she said. Its potential to transform health care is extraordinary--and it's accessible now. The text messages to low-income cell phone owners at risk for diabetes? That's being tested in a pilot program by the Office of the National Coordinator for Health Information Technology (ONC), where Ricciardi works, right now.

And the wireless scale is also an existing tool that has helped save at least one patient's life. Ricciardi recounts the story of an elderly woman who was using the scale. When her son looked at the computer-generated graph, he noticed fairly dramatic weight gain--something she had missed in the day-to-day fluctuations. He called her doctor, who discovered she was undergoing heart failure.

That incident, Ricciardi says, illustrates the need not just for consumers to be savvy about their health care, but also about their health. She wants people to be actively thinking about daily decisions they make--whether it's exercising or eating or flossing their teeth--as well as technology-savvy researchers when it comes to treatment choices for their various diseases and conditions.

"We need a shift in people's expectations and their mindset," she said. She uses the analogy of how much research and preparation most consumers do before they buy a new car.

“Many people will go to Consumer Reports, do research, and think about what quality” and type of car they want, she said.

"When you are thinking about your health care treatment, a life or death issue, most of the time we go in and listen to our doctor and assume they are going to point us the right way," she said. "But there's a huge amount of practice variation. I'm not knocking doctors. But the system needs the help of the patients, to help the doctors do their jobs better."

She notes that well-informed patients will probably give their doctors more information about their health history or their symptoms than someone who hasn't done any digging before an appointment. And they could mention therapies or other treatments that a doctor doesn't know about.

"Who has a greater investment in the health outcome than you and the people who care about you? So why not harness that?" she said.

To help bring out the cultural shift, the National Coordinator for Health Information Technology is putting together an ambitious outreach campaign to educate consumers and providers about how technology can improve people's health and streamline the health care delivery system. And they're shaping policies that they hope will knock down barriers to data-sharing.

Ricciardi, for example, wants to encourage or even require doctors to use text messages, or other electronic messaging tools, to communicate with patients. But right now, she notes, there are major financial hurdles to that.

"A doctor might say, 'Why do I want to email my patients? I'm not paid for that. I'm only paid if they come and sit in my office for a visit'," she notes. That creates inefficiencies and costs to the system, because a doctor might require a patient to come in for something that's easily resolved via email or a phone call.

As health reform ushers in changes to the current payment system, with more emphasis on rewarding outcomes than rewarding volume, that should begin to change, she said, and a text message mandate, at least for patients who want that kind of communication, might seem like a no-brainer.

For now, she and others in her office are focused on more basic targets. One element of the public education campaign will encourage providers to give patients their health care records--and encourage patients to ask for them. The campaign is aimed at clearing up confusion about federal health care privacy protection rules--known as HIPAA for the law that mandated them.

Everyone who has ever been to the doctor has signed a HIPAA form while sitting in the waiting room. And anyone who has tried to use the law to get their health care records knows the bureaucracy it unleashes.

"Many people don't do it or don't do it often, because it's a really lengthy awkward process," Ricciardi said.

The HIPAA rules were intended to protect a patient's privacy, so that, for example, a health insurer cannot send a company its employees' confidential medical records. The law was also intended to make it easier for patients to get their medical information, but Ricciardi said it was implemented in a convoluted way.

As a result, "HIPAA has unfortunately been greatly misunderstood by a lot of people--providers, patients and developers of some of the tools we're talking about," she said. Some doctors think they will violate the law if they give patients their own data, which is not true. And some health IT firms fret over whether a cool new gadget they've developed will run afoul of privacy rules.

This fall, the federal Health IT office will be unveil an advertising and social media campaign that spells out, to both patients and providers, the benefits of giving patients their own health care records. Digital technology, Ricciardi notes, will make exercising the right to health records easier.

"IN addition, if the marketplace of tools and services that use personal health data continues to grow, there will be more reasons people will want to get access to their health records," she said. "They can be the source of useful, actionable information."

That's just one element of the broader push that Ricciardi and others hope will encourage patients to use technology to be more engaged and proactive in their health care choices, and that will also encourage doctors to use technology to transform their practices.

"I think there's a general groundswell toward more consumer and patient engagement," Ricciardi said.

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