Why I Hope Reform Passes Today: The Building of a Vibrant Health Information Economy

A lot of people seem to think that health care reform legislation is going to pass today. For all the flaws of the bill, both from the left and right perspective, as someone who has worked on improving transparency and impact of medical information for many years, I’m hanging my hat on one hope: that the bill and one of its core elements, required coverage for preexisting conditions, will help to build a better national health information economy.

What’s a “health information economy”?

It’s a system where health information flows to where it’s needed to improve people’s health at the time that it’s needed, much like money flows in a vibrant economy to where it can best leveraged to create additional value.

Here’s my thesis:
  1. Lack of health care information flow increases the cost of care.
  2. A major reason for a lack of health care information flow is our justified fear that they will lose health insurance coverage or be denied employment based on that information.
  3. With universal coverage, we will improve the flow of health information and significantly reduce the cost of care in a variety of ways we can imagine, and even more ways we cannot imagine.
One of the most often-cited reasons for the expense of health care is the lack of relevant information. Without sharing information, tests get repeated, continuity of care is diminished and there is little to no collaboration between providers. Each part of the diagnosis and treatment processes is siloed into different health systems and different departments. These reasons have been well documented, but there are even more ways the lack of information flows increase the cost and reduce the quality of health care. In the past week there have been some counterintuitive posts about how competition in health care causes prices to rise rather than fall.

The lack of information flows are part of the reason, and not in the ways you may think.

Clayton Christensen, HBR professor and author of the Innovator’s Dilemma and the Innovator’s Prescription, had a nice piece in BusinessWeek, calling our current system “business model malpractice”. According to Christensen, “The type of competition that brings prices down is disruptive innovation. Disruption in health care entails moving the simplest procedures now performed in expensive hospitals to outpatient clinics, retail clinics, and patients’ homes.”

What Christensen does not discuss in this piece (and part of what Kaiser has in the examples he sites) is something that also seems to be flying beneath the radar of most of those following the health care reform bill now before congress, that moving expensive care to less expensive venues requires a) more open patient information and b) a patient health information network. The benefits of treating remotely can only happen when information is also managed remotely and flows throughout a network.

In addition, Thomas Goetz, recently wrote a piece in The Health Care Blog on the health care technology paradox (why technologies keep getting more expensive) in which he states: “…medical technologies still tend to rely on an expert class to actually deploy the technology”, essentially agreeing with Christensen’s major point that health care prices cannot drop until we move the technology to lower cost venues, and for that we need more open and universal health information. In order to lower prices, we must have more available data and more open systems.

Today, we are very far from such a state, and I believe a large part of the reason is people’s fear of losing insurance based on pre-existing conditions.

In terms of reform, I started thinking. “If everyone had insurance, would we be as worried about health care privacy. If you can’t lose your insurance (and are thereform much less likely to be discriminated against in employment) for a pre-existing condition, would we be so worried about keeping our health information private, or is it just a general privacy issue?

For a more informed opinion, I asked a friend who’s studied this subject for decades: noted health care economist and expert on the state of health care information, JD Kleinke. Here’s what he had to say when I asked him about whether no loss of insurance based on pre-existing conditions would improve health care information flows:

“Job and insurance discrimination are THE reasons people are terrified of the computerization of health care – even though we waive the privacy of our paper records every time we sign up for a new health plan. This “job lock” problem is one more reason (to be in favor of this bill).”
So, not only will universal coverage lead to better IT adoption, but it will also lead to a more vibrant labor market, potentially improving our quality of life in other ways. The bottom line is that the potential for loss of coverage causes an additional element of risk to both our health information systems and our labor markets.

One reason I’ve often thought that PHRs have not taken off in the market is the risk/benefit ratio. There’s a certain point before people will sign on to something where the benefits must outweigh the risks. For personal health information (particularly if it’s not available nor usable by a physician) the risks are crystal clear, while benefits are still a bit hazy.

What if we eliminated the risk of lost coverage? Would people elect to make their health information open when they no longer fear losing coverage, in exchange, say, for some kind of insurance discount? Most people on Facebook are exposing far more than that about their personal lives. Would we begin to more openly share information and subscribe to PHRs? What scientific questions could be answered in a shared information environment? Could there be a real economy of health information? Facebook has essentially built an economy of personal information. What would an economy of health information look like? How could participants benefit better than they have with Facebook?

For no othe reason, I hope this legislation passes. It will be great to wake up in a world where we each have a little less to worry about when it comes to thel privacy of our healh information, and a diagnosis does not mean a sentence.

I’d like to hear from you.
What would a health information economy look like?
Will we still need HIPAA?
What would be the key aspects of a health information economy?

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