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Health Data is Useful... if it Informs Conversations

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At Health 2.0 in Paris last week, I said: "Data on its own is useless. It's all about conversations." Let's dig into this a bit more.

I'm a strong believer in evidence-based medicine. We must learn from successes and failures, in particular those that come in the form of randomized clinical trials. However, as I transitioned from my academic (and outstanding) residency training into clinical practice in the community, it became increasingly clear that we must make the majority of clinical decisions in the context of insufficient evidence. And even when good evidence suggests a given course of treatment or testing, decisions often include complex pros and cons. What should we do?

The answer, of course, is that we must have conversations. The common goal of getting "the right information for the right person at the right time" is important, in particular because it allows us to have the right conversations. Doctors must talk to their patients about the consequences of a false-positive mammogram and the risk of a perforated colon -- and death -- from colonoscopy. Patients must talk to their doctors about how much they can reduce their risk of stroke or heart attack by taking various medications, exercising, and adjusting their diets. Some of these decisions are straightforward, but most involve personal preferences about willingness to take medications, make lifestyle changes, and accept risks of side effects or risks of future illness.

In some cases, the choice is between an untreated deadly cancer and a hopefully-less-deadly cure. Such cases underscore how important conversations are about data and preferences. Over time, we will have more data from traditional clinical trials, from patients who share their well documented experiences with others, and from analysis of data in electronic medical record systems. The addition of genetic information to these data sets reminds us that in some ways, every person represents a unique trial with a single participant.

We are lost without data, yet data alone cannot guide us. The increasingly rich data about health provides context for an increasingly important set of conversations each of us must have about our health related decisions and those of our loved ones. This is what Participatory Medicine is all about: conversations between pateints and doctors, between patients and patients... conversations among all of us working as colleagues to improve our health.

(This post was cross-posted here on the e-patients.net blog.)

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