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

Gienna Shaw, for HealthLeaders Media , September 29, 2011

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.
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1 comments on "Health 2.0: ONC Pledges to Make Patients Meaningful Users, Too"

@cascadia Sherry Reynolds (9/29/2011 at 2:10 PM)
Actually one of the leading epatient advocates who actually works in health IT - along with Rob Koldner the then head of ONC and some ONC staffers created the position for a national consumer patient advocate but when he left and David Blumenthal, MD was brought in it got put on hold for almost 2 years. David even asked where in the funding legislation (ARRA and HITECH) did it mention a "program" for patients - instead of realizing that everything we do should start with their needs and that patient centered care is a core principal of everything and has been clearly articulated as not only one of the IOM pillars of care but as Berwick (IHI, CMS) has said the foundational piece. ONC missed the chance to embed the patient voice and patient centered design principals in all of their programs and are now playing catchup instead. Unfortunately this can be challenging when the consumer piece is being lead by ONC policy people and lawyers (ie - consumer rep at NeHC) who have never worked in healthcare nor run grass roots political campaigns let alone understand health IT and how transformative it can be. What they need are people who understand grass roots campaigns vs policy as well as people who use and understand technology. In the end however it isnt about "freeing" data or technology but using those tools to design care around the patient.




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