The Ethics of Information Management in Healthcare, Part I

This is how the water is

An Ocean of Data

We’re surrounded by data. Almost anything we do anymore generates data. We’re like the fish in David Foster Wallace’s 2005 commencement address who have no idea what water is; we’re engulfed in it, consumed by it as much as we’re consuming it. And that leaves most of us blind to the realities (and the responsibilities) of having access to, and generating, so much data.

The minute we get out of bed in the morning we are creating new data: from the thermostat that’s linked to the internet (the one that senses when I’m moving and adjusts itself accordingly), to the digital scale that’s connected to my phone (the one that so matter-of-factly tells me how much of me is bone and how much is fat), to the dozens of productivity apps on my pocket computer that essentially run (ruin?) my life. I am (we are) continuously dumping buckets of data into an overflowing sea of information.

My car generates data, my computer (and my tablet and my phone and my watch), every website I visit, every social account I manage, every online purchase I make, all generating data. All day. All the time. It’s exhausting just thinking about it.

Of course, you know this already. Your life is likely very similar. Technology is the reality, and core to that reality is massive mountains of data.

Data = Information

Data is no longer just some abstraction. It’s not just zeros and ones, bits and bytes, floating around in the ether somewhere, waiting for some research analyst to make sense of it all.

Your data … my data … is information. It tells a story. That is, after all, what gives it value.

More importantly, thanks to modern technology, most of this information is immediately actionable.

The moment you create it, someone (you, someone you know, many someones you don’t know) can do something with that information. They can diagnose you (connected insulin pumps). They can sell to you (Amazon). They can actively push related content to you (Google). They can tell you where you are (Waze). They can tell you where to go (Yelp). They can tell you when they think you aren’t behaving like you (LifeLock).

Long gone are the days of manual intervention and mediation to make sense of all this information. The fire hose is on, and our mouths are all wide open.

This is the reality. It is as amazing as it is scary. And it creates some very interesting implications for all of us. Whether we’re data creators, data consumers, or data coordinators (we’re all of these things, aren’t we?), we have an obligation to understand the power and the impact of all that information, whether we like it or not.

Ands when it comes to data in healthcare — all of healthcare — that obligation becomes much more acute. Of course, it also becomes much more confusing.

I’m not talking about HIPAA

When most of us think of “information” in healthcare — especially information with ethical implications —we immediately think HIPAA; the protected health information (PHI) that we give to and that is generated by doctors, care givers, and even payers. After all, this information is private, and privacy continues to be an area of intense care and scrutiny.

The nature of this information (stuff from your health record, stuff from your insurance company, etc.) and the obligations of those involved in the process of accessing and managing it is well documented. And that’s great. Protecting this data is critical for a whole range of reasons that I am not going to talk about here. In fact, I am not talking about data covered under HIPAA at all.

Rather, I am much more interested in addressing how management — and certainly mismanagement/non-management — of even the most basic, non-clinical information can support or erode the entire system of care; perhaps in ways even more damaging than mismanagement of protected health information. Bold claim? Maybe.

Every piece of data supports the continuum of care

You may or may not agree with this statement at face value. That’s ok. We’ve been trained for millennia to immediately (quickly, at the very least) prioritize information relative to the value it provides us, right now, and then discard the rest.

Some information is important and needs to be cataloged and categorized and kept in close range for immediate use. Other information is irrelevant and can be disregarded, deleted (all of those emails from eBay and Williams Sonoma, for example). Fine.

Of course, that assumes a 10-foot view of the world, where we are only interested in immediate impacts to our present reality: “That looks like a lion. Lions eat people. I’m people. I should run.” Thank you, Darwin.

In our age of information, however, we don’t always have the luxury of just caring about how something impacts only us, right now. In fact, the the more rapidly technology evolves, the more fundamentally important second- and third-order effects of those technologies and the information they generate becomes. And we can’t see that from ten feet off the ground.

When it comes to complex systems and structures like healthcare, we have always had an obligation to both the 10- and the 100,000-foot view. Consequence of action (or inaction) has always played a role in the design and delivery of care. But we’re not talking about delivery of care to an individual. We’re talking about the process of complex organizations creating enabling infrastructures that make the delivery of care possible. We are talking about the non-clinical structures that support the delivery of care without always having a direct role in it.

That is the type of information that has a real impact. That is the type of information that has ethical implications far beyond what most of us seem to acknowledge in the normal course of business. Why?

Because that is the kind of information that informs and enables the health and integrity of the entire system. That is the kind of information that brings costs down or blows them up. It is the kind of information that accelerates effectiveness, efficiency, and innovation or stifles it.

If we cannot wrap our hands and our heads around the impacts and implications of information created by and for the enabling infrastructures driving the delivery of care, then we negatively impact — as we have been doing for decades now — even the care that is delivered.

If I have your attention — I hope I do — stay tuned for part II, where I will get specific about the information we’re squandering and the negative impact it is having on systems of care, and why I believe it is our ethical obligation to change the way we organize ourselves as entities to better manage, leverage, and share information across the entire healthcare value chain.