Health Data is Useful… if it Informs Conversations

PUBLISHED ON  April 12, 2010

WRITTEN BY  Roni Zeiger

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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 Huffington Post blog.

The Biggest Wasted Resource in Health Care? You.

PUBLISHED ON  February 22, 2010

WRITTEN BY  Roni Zeiger

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A few weeks ago, a colleague at work took his baby to the doctor because she wasn’t quite behaving like herself. A few visits later, they hadn’t received a diagnosis, and the doctors suggested they wait at home for the girl to feel better. But the baby just wasn’t right and seemed to be getting worse.

So the two people with the biggest incentive to figure this out — her parents — decided to do their own research. They searched on the Web for their daughter’s symptoms, which included some drooping of her head and looking lethargic and weak. They noticed that “infant botulism” appeared in some of the search results, read about it and thought the descriptions fit just how their daughter was behaving.

They returned to the ER with this information in hand and the doctors agreed that this was probably infant botulism. She was admitted to the hospital, the diagnosis was confirmed, and she was soon getting the specialized treatment required for this often fatal disease.

This is not a story about doctors who should have made an obvious diagnosis. This diagnosis is quite hard, especially because botulism is exceedingly rare: There are only about 100 cases reported in the United States each year. This means most doctors will never see a case, and it’s difficult to think of a diagnosis you’ve never seen.

Indeed, I think the doctors did something terrific. They welcomed the family’s ideas about the diagnosis, the baby was hospitalized for only a few days and she has recovered fully. In most cases, the diagnosis isn’t made until paralysis from the botulism toxin has resulted in difficulty breathing and infants need ICU care and several weeks in the hospital.

The hospital staff told my colleague that this was the earliest case of infant botulism they’d seen.

This is a success story for “participatory” medicine, about patients who decide they need to be fully engaged co-pilots in their care, and doctors who welcome them into the cockpit.

So does this mean everyone should use the Web to guess their own diagnosis or most appropriate treatment, and present their findings to the doctor? Not necessarily. Nor does it mean that the Web is always an easy place to find the right answers.

Indeed, while the Internet may be especially useful for diagnosing rare diseases, it’s also easy to get frightened by serious illnesses when you search for symptoms of a common cold.

Patients as Free Labor

But this does mean we need to change some of our stereotypes. Doctors should welcome research done by patients, instead of the not uncommon reaction: “Oh, boy, here comes someone with printouts from the Internet. Now I have to convince them to stop worrying about everything they just read.”

Embracing patients who do their own research is more than just good bedside manner. It’s free labor.

You know what I do when I’m confused about a diagnosis when seeing a patient? I ask them what they think it is. Even though most cases aren’t like this dramatic case of infant botulism, this sometimes helps me with the diagnosis, and it almost always helps me understand what they’re worried about.

What better way to start a partnership?

An Important Thanksgiving Conversation

PUBLISHED ON  November 25, 2009

WRITTEN BY  Roni Zeiger

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Thanksgiving is a time to be with family and to remember and share how much we care about one another. A conversation we don’t typically have with mom, dad, brother, or sister is about our wishes at the end of life. As a doctor, I’ve witnessed many tragic occasions where a loved one may well have been treated quite differently than they wished at the end of their life, because the family just didn’t know what they wanted, and it was too late to ask.

This is the second annual “blog rally” to promote Engage With Grace – a movement aimed at having all of us understand and communicate our end-of-life wishes. First, a bit of humor for you to consider. Let’s think of it as a warm-up:

 

 

Now consider the five questions from Engage With Grace below. Think about them, document them, share them. Best wishes to you and yours for a holiday that’s fulfilling in all the right ways.