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The Problem With Health Literacy

At Creek Content, we spend most of our days deep in the world of health care. We work with clients in highly regulated, complex industries, and for the most part, that means we’re working in health care. A fundamental issue for the health care industry is the idea of “health literacy.”

Health literacy is the idea of not just “literacy” — which we tend to think of as the ability to read and comprehend written material — but also includes computational abilities related to health-care self-management. It means, you can find, evaluate, understand and act upon the information you need to manage your own health successfully. It includes the ability to understand your doctor’s instructions, the ability to navigate the insurance and payment systems, and lots more.

Health literacy is a pretty new term, and it’s been the subject of a number of research efforts in the past 20 years. There’s a lot of information now being created to help health-care providers better communicate with their patients, and all of that is for the good.

However, as we work with clients and content [in the United States], I see a fundamental perspective flaw in the way health literacy is often discussed. Usually the message is, your patients are health illiterate, so you must a. educate them or b. dumb down your info. To an extent, I will agree to the factual truth of the first part of that assumption: the U.S. population is not as literate as we might assume. Angela Colter has done some great work not only researching how people with low levels of literacy search, but also bringing together some critical statistics that everyone in public communications should understand. If you work with the general public, about half your audience has low literacy skills.

And in the health care arena, we see a lot of wailing and gnashing of teeth over these issues — understandably, to a degree. As a society, our health care knowledge has advanced rapidly in the past 100 years. Cutting-edge research is often incredibly specialized, conducted by researchers with years of post-graduate training. It’s not easy to explain that to the rest of us — the majority of the population without multiple advanced degrees in health topics.

Here’s my problem, though. A lot of the discussion in the realm of health literacy has to do with how we educate patients — how do we make them health literate. And that’s exactly wrong-headed to me. Think about this: Do car manufacturers bemoan the fact that fewer Americans than ever repair their own cars, or could even explain how an internal combustion engine works? Do you see phone companies complaining that we don’t understand the realities of managing complex data networks? Nope — they’ve just figured out how to make us as expert as we need to be to successfully use their products.

Health care is different than buying a car, but we shouldn’t need an advanced degree to manage our own health. If that’s the standard, we might as well give up now. Traditionally, the health care industry has viewed itself [with good reason] as an expert whom we should consult for the right answers. What I think the industry is learning is, that that approach isn’t very effective. If  we all want to be healthier, we have to learn how to communicate better — with each other.

Let me be clear — I think Americans should be more literate, health literate and otherwise. But that’s a systemic educational and cultural issue that I don’t think we can ask the health care industry, or patients alone, to solve. Most importantly, we’re doing patients a disservice by suggesting to each other [and sometimes to patients themselves] that they aren’t literate. That’s blaming the victim, to my mind. No one sets out to be less than fully literate.

Instead, I’d prefer to frame the health literacy issue as a health communication issue. How do we create health communications in forms that are easy for our patients [of all education levels] to understand? How do we carefully structure provider-patient interactions in a way that makes it easy for us to communicate clearly and honestly? How do we make the doctor-patient relationship feel like a partnership?

These things are happening in health care, but not nearly enough. When we figure out how to make health care information accessible to all our patients, then we’ll have done a good day’s work.

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SXSW: Todd Park from HHS on the Power of Open Health Data

Interesting…Todd Park introduces himself as the CTO and “entrepreneur in residence” at the U.S. Dept. of Health and Human Services. I think his point is that his background is tech entrepreneurship. He says, “That may lead you to ask what the hell I’m doing working for the federal government.”

My notes below are paraphrases [my best efforts] of Park’s talk and my comments in italics.

So he is supposed to work with the government to figure out how to harness the power of data to improve public health in America. He’s going to describe several things they’re doing at HHS. Never been a better time to be an entrepreneur at the intersection of health care and IT. Amen to that.

There are new incentives + information freedom that add up to rocket fuel for innovation.

Starts with “meaningful use,” the new Medicare/Medicaid incentives that reward meaningful use — improving outcomes — of electronic health records [EHR]. Government is trying to send a signal to the industry of what appropriate, meaningful use of EHR is.

Meaningful use is the appetizer when it comes to incentive change.

The big enchilada is payment reform.

Obamacare [OK, he uses the formal name of the bill, the Affordable Care Act] is designed to shift from pay for services to pay for health and value.

The Centers for Medicare and Medicaid Innovation Center is funding to identify ways that payment reform is already working, identifying experiments that work. Oh, I remember this. This is the part of the bill I was scoffing at, thinking it was too small-scale to make a difference. Park says that if Medicard/Medicaid identifies a working reform, then it’s a regulation change, not a law change, to implement it. That’s the secret sauce in this bill, it seems. The $10B to fund the innovation center has been “appropriated.” Hmm. I have to check on that. I thought that’s what the GOP is trying to de-fund.

Reforming payment systems
He’s got a really massive slide with a lot of actually useful terminology on it, but it’s a lot to capture and explain here. Gist of it is, there are a number of ways that we can improve access and reform payment to achieve savings and better health. Good. He’s posting his slides somewhere. More on that later.Updated 3/19/2011: Park’s slides from SXSW are now on Slideshare.

Information Liberation
Park enjoys saying liberacion in Spanish with great flair.
The Direct Project
This is a collaborative project to enable simple, secure tramission of health care data over the Internet. 60 vendors now implementing this solution according to government standard released in 6/10.

Blue Button
This allows any veteran or Medicare beneficiary to get an electronic copy of their own health information. Launched in October 2010 and more than 200,000 downloads so far.

So another initiative is trying to make the market more transparent. Healthcare.gov is part of this. It has a comprehensive list of all open insurance plans in the use, including pricing. They will release APIs of this data later in the year.

Next: Want to morph HHS into the NOAA of Health Data. Now this is kind of cool. They have already begun publishing data on the CHDI website. There’s some interesting looking stuff there. I will have to dive in further later. From a work session they had last year…Park says Tim O’Reilly said, you can’t make people find the data. The data has to find them. Now, Bing is using the CHDI data to show patient satisfaction data in search results when you search for a hospital. National Association of Counties helps counties set up public sites using this data, showing health information for their communities. Healthy Communities Dashboard. Community Clash is another site built on this health data. [Disclosure: Community Clash is a Healthways site, which is a client of mine, but I haven’t worked on that site.]

Asthmapolis….lets you geographically track where you are having asthma attacks with a GPS connected to your inhaler. Soon will be anonomizing the data so we can have asthma maps to find hotspots.

This guy is rapid-fire machine-gun spewing health data projects at us. There is a LOT going on.

www.healthindicators.gov….downloadable data and available via API. Community health data.
data.medicare.gov….APIs to compare hospitals, nursing homes, home health, dialysis. Soon physician compare.
They are going to take Medicare claims files available to qualified people [ie., people who can handle privacy requirements, I guess] to do quality analysis.

MedLinePlus – Can send patient education materials in response to EHR queries via its API.

All this stuff is mentioned/linked on HealthData.gov. Oh, also includes a link to other sites offering free health data.

Mentions a brand new funding org for health apps: Rock Health.

For those who think health data, or any data, is a snore, please see Todd Park speak as soon as possible. I have never seen so much energy about data.

Now he’s talking about entrepreneurship and startups. “If you get the best people, you win.” Wants to get superstar talent focusing on health data. He wants you to contact him to do a health data camp or if you need help with health data: todd.park@hhs.gov or @todd_park. Is now begging people to email him. Please contact this man about health data.

Park is getting a real accolade from a guy behind me, who tells the room about the industry suffering through a decade of empty promises and now the past year of fabulous, growing access to government health data. Well said.

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