Health 2.0: ONC Pledges to Make Patients Meaningful Users, Too

There's been lots of talk about meaningful use of health information technology in the past year and a half, but one user is often left out of the conversation:  the patient.

If discussions at the Health 2.0 conference in San Francisco this week turns out to be more than just talk, that's about to change.

In two separate sessions, officials from the Office of the National Coordinator for Health IT conceded they have not paid enough attention to patients in developing HIT policies and programs. "We come to this community with humility," said Farzad Mostashari, MD, ONC's national coordinator for health information technology. "This is not something that I personally have been at the forefront of fighting for. But I really do believe we're on the right track, here."

That need to better incorporate patients and consumers comes not from within ONC, said Lygeia Ricciardi, ONC's senior advisor for consumer eHealth, a job that was created less than a year ago. Rather, it comes from paying attention to the types of folks who are creating eHealth technologies designed to engage patients in their care. 

"Technology is changing every aspect of our lives," she said, "And that's beginning to come to healthcare."

Ricciardi outlined some of ONC's consumer-focused goals, which include:

• Giving consumers access to their own electronic health data. They've had the right to access their own data for a long time, Ricciardi said, but it's been "pretty darn hard."
• Making patient data more actionable so that patients know what to do with it once they access it. Again, tools unveiled at the conference will help achieve that goal, she said.
• Shifting and changing attitudes about ownership of health data. Physicians and providers have not always been willing to share data with each other, let alone with patients. That's changing, she said.

One town hall audience member asked how the agency intends to reach those goals. Specifically, how can ONC and the industry in general convince consumers that it is OK to walk into their doctor's office and ask for their health data and how can providers ensure that patients get those records and get them consistently? 

"We don't own consumer eHealth in any way, shape, or form," he said. "We are at best enablers and sometimes conveners. But we recognize that the real strength of this movement comes from out there, from all of you."

For example, he said, nurses are willing and uniquely able to advocate for patients and help them in getting access to their healthcare data. That's the kind of partnership that will drive the movement, he said. Caregivers and family members can also play a role, he said.

ONC is also promoting its new website, healthit.gov, which has information about health IT for consumers and healthcare professionals as well as its new Consumer Health IT Pledge initiative.

Organizations that participate commit to making it easier for patients to access their personal health data and to educate patients as to why it is important to do so. ONC representatives also touted the Blue Button Initiative, a platform that makes it easier for patients to download their medical records.

Patient engagement is a core piece of meaningful use of electronic health records, Mostashari said. Meaningful use requirements sets the groundwork for "massive liberation of patient data" for patients, providers, developers, and innovators to help patients take better care of themselves, engage more in their care, share information, and help coordinate their care.

"All too often it is the patient who is not just the courier of their records, but the one in the best position to coordinate their care." 

The conference concluded on a patient-centric note, with a "Patients 2.0" panel discussion. Several patients and patient advocates had a chance to ask direct questions—created during a patient crowdsourcing exercise—of Mostashari and Ricciardi.  

Mary Cain, a healthcare technology consultant and one of the patient representatives on the panel, noted that the government has spent $20 billion getting electronic health records into the hands of providers. Where, she asked, is the $20 billion for patients to access and interpret their health data?

Mostashari again pointed to conference attendees. "There's a lot of folks I met today who are creating applications and services and new innovative services for keeping people healthy," he said. "The single most exciting thing I've seen today is you all voting with your feet and your wallets and your investor's wallets that there's going to be a market for keeping people healthy."