Empowering Consumers through Health IT

This is a guest blog post by Lygeia Ricciardi ( @Lygeia ).

The Office of the National Coordinator’s Health IT Buzz blog has a great post with questions about the strategy for empowering consumers. In it, Jodi Daniel mentions a meeting that both Ted ( @tedeytan ) and I attended last week at ONC about communicating with consumers about health IT. Since this is what I think about, oh, a lot of the time, I was happy to attend.

The meeting was a good kickoff to an ONC-public conversation—now taken a step further by Jody’s blog post. Afterwards Ted and I continued to explore some of the meeting’s themes with fellow attendees Regina Holliday ( @reginaholliday ), and Anita Samarth ( @anitasamarth ), plus Donna Cryer ( @dcpatient ) and several thoughtful MDs and EHR implementation experts we work with.

One of the issues that came up was Regina’s desire to see more “direct” consumer involvement at meetings like the one at ONC, as well as the involvement of consumer advocacy organizations. But many aren’t fully equipped to participate. There’s a need for training, coordination, and financial support of consumers to participate not only in national policy discussions, but also in improving their local hospitals.

Why is “consumer engagement” such a challenge in healthcare? Other industries get it. But in other industries, the consumer controls the purse string–so business listens. In healthcare, the consumer and his or her dollar are separated by a complex, opaque system… so the consumer voice seems to matter less to the providers of care.

ONC has put out an open invitation, if not to transform healthcare completely, to participate in discussions about how to engage consumers through and about health IT. Jody lays out 4 Objectives and some suggested activities under each.

The Objectives are:

Engage consumers in federal health IT policy and programs.
Accelerate consumer access to electronic health information
Foster innovation in consumer health IT
Drive consumer-provider electronic communications

Following is my response to her… what do you think?:

In general I like the four objectives you laid out. I would also add a fifth: Strengthen privacy protections. Trust is an essential component in electronic information sharing, particularly when it comes to health. Possible activities include stronger enforcement of HIPAA, and the development of consistent privacy rules for PHRs and other consumer services that are not covered by HIPAA. Additionally, we should standardize the way in which such services communicate privacy risks to consumers (via a standardized “privacy label,” visual image, or layered privacy policy).

Here are some suggestions on your existing objectives:

Objective A: Engage consumers in federal health IT policy and programs.
Yes, and how you do it matters a lot. Any communications campaign should focus on the big picture: better health, playing a more active role in your own health and healthcare, stronger connections to your doctor. Health IT tools are just an enabler, not the headline. And these conversations should be in the context of health reform, not separate. In addition, education is local, so involve local communities and tailor the conversations to their needs. It also makes sense to use social media (as well as old school conversations in the barber shop) to help you.

Also, while it’s important to invite consumers to rulemaking processes and the like, it’s impractical for most to participate. Most people can’t afford to spend unpaid time talking about health IT, and many don’t have the background knowledge to do it if they could. Even consumer advocacy organizations are cash strapped and many can’t afford a “health IT specialist.” It would be great for ONC to support (financially and otherwise) the participation of consumers, not just in this particular initiative, but in playing a sustained role in discussions related to shaping health IT more generally, whether via federal, state, or local health system policies.

Objective B. Accelerate consumer access to electronic health information
Definitely. Enough said.

Objective C. Foster innovation in consumer health IT
Generally yes. Another way to foster innovation is to support research that identifies the concrete monetary and/or outcomes benefits of greater consumer engagement through health IT. If you’re a health system, what’s the ROI on offering a PHR? If you are you are a consumer, could using a home heart monitor and emailing your doctor reduce chances of a heart attack, or cut the risk of medical errors? Some hard data on benefits (not just “perceived benefits”) of health IT could drive provider and consumer demand alike.

Objective D. Drive consumer-provider electronic communications
Sure. Let’s push the next stages of Meaningful Use further in this area. In addition, the link between consumers and providers returns us to Objective A—the communications/outreach idea. Surveys show that patients trust their doctors more than anyone else in the health system. So why not use the regional extension centers (RECs) to help equip doctors to participate in the conversation about health IT with their patients? That would make sense given that patients whose doctors participate in Meaningful Use are among the most likely to actually have access to health IT tools.



Great post, and as usual with your posts, tapping into a lot of interest in this area. Thanks for bringing up the issue of truly supporting consumer engagement by putting it on equal footing with industry. Regina Holliday asked a very courageous question ( See this Tweet ) at the meeting we were at, and I think we will need to get to a place where the response is not silence, or a place where her question doesn't need to be asked anymore .

And I love your comment on Objective B. To quote Jennifer Lopez, "It's simple when it's right."

Always a pleasure collaborating with you,


Lygeia, this is a great extension of our conversation. HIT/EHR/EMR are just letters to the vast majority of consumers and even very engaged patients. One of the most important parts of this process that you alluded to is creating some version of " This is what HIT means to you". It is not just engineers or computer programmers who need to be involved in creating systems of meaningful. Breaking down for consumers how they may WANT to interact with EHRs, what is possible, and what they stand to gain will hopefully raise people's expectations and engage their interest in participation in the process at this crucial stage.

Ted Eytan, MD