It was sometime in the mid-nineties that parents started showing up in my office with reams of paper.  Inkjet printouts of independently unearthed information pulled from AltaVista and Excite.  Google didn’t exist.  In the earliest days of the web, information was occasionally leveraged by families as a type of newfound control.

A young father and his inkjet printer

One case sticks clearly in my mind.  It was that of a toddler with medically unresponsive acid reflux and chronic lung disease.  After following the child for some time, the discussion with the family finally moved to the option of a fundoplication (anti-reflux surgery).  On a follow-up visit the father had done his diligence and appeared in the office with a banker box brimming with printed information.  He had done his homework and his volume of paper was a credible show of force.

At the time in Houston the Nissen and Thal fundoplication were the accepted fundoplication procedures in children.  Deep from the bottom of one of the boxes the father produced a freshly reported method of fundoplication from Germany.  He had compared the potential complications with other types of fundoplication and this was the procedure he wanted.

What he didn’t understand was that an experimental technique used on a limited numbers of adults didn’t necessarily represent the best option for his toddler.  I gave it everything I had but didn’t get very far.  The tenor of his argument was slightly antagonistic.  Ultimately there was nothing more I could do.  I deferred the remainder of the discussion to one of our best ‘talking’ surgeons but knew the father wouldn’t get the time and consideration that I had offered.

I never saw the child again.  As they say, the father voted with his feet.

Information is the new third party in the exam room

I recall this so vividly because it was the first time that a parent insisted that their own information should supercede better clinical judgment and the clear individual needs of a child.  In hindsight, I believe, there was more to the encounter than a dialog surrounding a procedure.  This visit was about a young father’s newfound capacity to defy a system that for years has marginalized patients.

This was the first of many encounters involving a theme that has come to define my work with patients:  the contrast between information and good information.  Information is the new third party in the exam room.

Since the mid-nineties I have worked with thousands of empowered young families.  Any success that I’ve enjoyed stems from respect of the relationship that my patients have with their information.  Despite the rare case where the encounter is seen as a struggle of perceived control, my vantage point of the patient’s evolving relationship with information has been remarkable.

Sometimes I feel like a witness to history.

 

Many times when faced with a clinical dilemma a parent will turn to me and ask, “What would you do if this were your child?”

When faced with this question I never quite know what to say.  And each time I feel a little on-the-spot.  But why is that?  Aren’t I comfortable recommending for someone else exactly what I would do for my own child?  After all, what have I got to hide?

Here’s the problem: the decisions we make as parents involve our values, tolerance of risk, level of concern and frustration, prior health experience and religious belief to name but a few.  There’s no way to fully tease those things from the parent sitting across the room.

Perhaps it’s the intensity of the fact that my child would or could be in the same situation that bothers me.  When I disclose what I would do myself as a dad, it’s intimate.  The decision I make for my child says a lot about me and my fears and concerns.  When I disclose that I’m biasing their decision with the things that are important to me.

When I get this question, what I really hear is, “I can’t really weigh the options so help me out.”  And I do.  With my answer they believe that I’m telling them what I would do.  But in fact it’s nothing more than an exercise to help them understand what they really want.

When I’m in an exam room I’m a pediatrician, not a father.  But the art of what a great pediatrician does involves understanding the mindset of a parent. Through this understanding I can frame my recommendations in such a way helps parents make the best decisions for their kids.

 

The big news last week was Open Notes – the trial underway at Boston’s Beth Israel Deaconess Hospital where patients have unbridled access to their electronic records.  After a summary of the project was published in the Annals of Internal Medicine the story made headlines.  The news:  While patients have always had the right to their own records, Open Notes improves access in an unprecedented way.

Go here and read the overview of what the researchers have in mind.  It’s a balanced look at what this all could mean.

Just a couple of first thoughts on open source records:

How should we be spending time with patients?

I wonder how we should be spending our time with patients.  It’s a regular thing in my clinic:  Parents hand carry lab results from their referring pediatrician to me.  And, of course, they look at those results.  They worry.  But the problem is that even on something as simple as a complete blood count (CBC), the results invariably contain values that, while ‘out of range’, are irrelevant to their child’s condition.  They want me to justify why a LabCorp’s computer flagged their growing child’s alkaline phosphotase as abnormal.

But shouldn’t I take the time to go through those results with the parent?  After all, don’t I care?  Of course I care but the time I spend with a parent should involve dialog surrounding real diagnostic and therapeutic issues related to their child.  Explaining why an irrelevant computer-calculated blood index is out of range is a waste of that parent’s precious time.  Unfortunately a parent doesn’t know this.  Perhaps more importantly this use of time is unfair to the child who I serve on a level equal with her parent.

This issue needs to be reconciled in a practical way.  Unlimited access needs to be balanced with the unlimited demand to explain.

If transparency is king, trust is queen

I’m not sure that the parents who hire me will choose to spend their evenings pouring over their child’s record.  Of course that should be their prerogative.  But I suspect that most trust that I’ll help them navigate the data and thoughts buried in their child’s record.

Immediate access or not, patients ultimately need to partner with someone unequivocally trusted to act on their behalf.  Despite the internet, the hive and facilitated patient networks, the body of personalized technical information contained in that medical record needs a docent.

There will always be those who choose to chase and investigate and there will always be stories about how unfaltering personal will saved a life in the hands of an irresponsible physician.  But in the end there has to be a relationship founded in trust.

Sometimes I wonder if we have a provider problem not a transparency problem.

Where this goes, nobody knows

Access is good. But I wonder how Open Notes will measurably change care and outcomes – and not through the calculator of a Harvard statistician but in my clinic in The Woodlands, Texas with my young parents.  I watch them, think about them, and try to put their experience into the context of what I hear in the social health dialog.

As I’ve suggested in the past, I think there’s a disconnect between those of us who think about this stuff and patients we treat.  To some extent our social health conversation carries on in relative isolation.  Our network sees and feels the world of health through the eyes of a small, vocal minority.  We like to believe that all doctors are like Berci working in hospitals run by CEOs like Paul Levy caring for patients who all think like e-patient Dave.

The authors, by the way, make it pretty clear that we really have no idea how this will pan out (“the implications are broad and filled with uncertainty”).  But let’s follow this and see where it goes.

 

We love to talk about our own health. It’s our right and our business. But how liberal should we be when talking about our kids?

Should the health information of children be protected?

I’ve been thinking about the concept of the personal health footprint and I wonder what the future holds for publicly disclosed health information. Will the painful struggle with your baby’s ambiguous genitalia revealed on your blog create issues as your child grows into adulthood? When we publicly deliberate the meaning of a 9p chromosomal duplication in an otherwise normal appearing child are we potentially doing her an unknown disservice?

I ask because I’ve seen a sharp rise in parents writing about their kids and their problems – and for good reason.  Health transparency has advantages for the family struggling with a chronically ill child.  Most dialog is centered around a community that provides critical support for these families. The benefits to parents are too numerous to count.

But I have to wonder where all this information will settle? How could your child’s personal health footprint be used? Twenty years from now what will your child’s network know about her? And how will your daughter feel when a personal detail from 2010 surfaces?

No one knows the answers to these questions.

Balancing the needs of parents with the needs of a sick child might be described as impossible. But just as we should think about the light we shed on the shadowed crevices of our health history, we might consider how much we say about our kids.

 

Recently I wrote about how to handle things when patients try to engage doctors in the social media space. If you missed it you can read it here. If you want to save yourself 5 minutes consider the bottom line: Doctors and patients shouldn’t be discussing patient-specific issues in the social space.

I heard from Ted Eytan regarding my post:

The question is interesting: If the patient initiates the dialog is open discussion of a specific medical problem then okay?

I wish it were that simple.

It’s important to discriminate between what patients do on their own and what patients and physicians do together. Patients (lets call them people, shall we?) can effectively do as they please. You can live tweet your vasectomy or post your pathology report on your blog. Transparency is, after all, a badge of honor.

But when patients (I mean people) and doctors get together it gets a little trickier.

Here’s why:

If it’s okay with you is it okay with me? Open discussion of privileged medical information requires written consent. Healthcare attorneys have suggested that the initiation of communication by the patient implies consent. But don’t look for me to be the guinea pig when this one’s tested in the courts. Bottom line: permission to discuss is a little more complicated than you might think.

Documentation.  Physicians bear the responsibility of documenting everything that happens between doctor and patient. From state medical boards to third party payers, physicians are obligated to get it all down.

More importantly, the documentation on most social platforms isn’t detailed enough for other medical professionals or auditors to follow what’s gone on between you and your caregiver. Let’s not forget that Twitter has a habit of disappearing after a couple of weeks.

What are you really saying? Then there’s the issue of assessing a febrile infant in under 140 characters. If you’ve ever cared for the sick you know that sorting out problems isn’t always easy. Assessment of even the simplest medical issue requires clear responses to clearly understood questions. Current technology isn’t built for this kind of exchange (HelloHealth not included).

It just isn’t smart.  Sharing detailed personal health information in a public forum isn’t smart. Sure the tongue-in-cheek comment about your ingrown toenail isn’t likely to create problems. Discussions about anything more serious isn’t for others to hear. Keep in mind that everyone from employers to insurance companies are tuning in to what you have to say.

So do we shutter the idea of any interaction between doctors and patients? Absolutely not. E-patients and physicians need to be together socially. This only helps our relationship. This is where the real power of social health lies.

There are plenty of very accessible and private formats by which you can communicate with your doctor. And if your doctor isn’t available by those means it’s really unlikely you’ll find her rootin’ around on Twitter.

 

UpToDate, arguably the most trusted information brand in medicine, is now in the patient information game with UpToDate for Patients. I ran into deputy editor Alison Hoppin (a pediatric gastroenterologist) at the American Academy of Pediatrics last week and she gave me a test drive. My bags are barely unpacked and I’m already using it in my practice.

I mean, what a concept. Draw content from some of the best minds in medicine, add skilled editorial input, and package it in an approachable format without the glitz. And unlike many supermarket health sites, UpToDate does not discriminate against the pediatric population. You’ll find many diseases and conditions covered equally well for children and adults (see celiac disease in children).

And I love this: UpToDate even offers information prescription pads for doctors. Beyond simply reminding patients where to go, this makes the point that it’s a doctor’s responsibility to help patients initiate navigation in the online space (what I like to call preemptive online health literacy).

This icon sequence on the patient entry page gives some hint to where UpToDate sees this going. Reference step 3: some patients will want the full nine yards and pay for physician-level information. And why not, really?

If UpToDate can expand its content and leverage its rock solid name with doctors, look for them to establish a powerful foothold with patients in the medical infosphere.

 

I recently had dry erase boards installed in my office exam rooms. I didn’t give it much thought but felt on a whim that it might help with diagrams and things. As it turns out, the result has been dramatic. Parents are crazy about them.

Here’s how I use them:  After my history and physical I summarize the 4-5 key points of a child’s story in the upper right part of the board. I then generate a small differential diagnosis in the lower right side. In the left upper side I list off what I think we should do. I also use self-scribbled schematics of the upper intestinal tract and colon to illustrate key ideas.

I used to stare patients, talk and use my index finger for ‘air diagrams’. Now I scribble in a way that parents can see. I can see parents thinking as they look, ask questions and process information. While I have no data to support it, I would be very surprised if retention were not improved. White boarding also helps me organize my own head when discussing care with a parent. At the end of the visit I transcribe my brainstorming into my EMR. Here’s my favorite part: I encourage families to photograph the board with their smartphone. They love it.

Perhaps it’s the visual thinking that appeals to patients. Perhaps it’s the perception that I’m spending more time with them.  Everybody tells me I look like House M.D. I’ve never seen House.

Carlos Rizo at Innovation Cell has written about how small changes in healthcare can have a big impact. I think he’s right. Here’s an example that was discovered purely by accident (call me the accidental disruptor).

If you’re thinking of doing this in your clinic, spend money on quality boards.  My 4×3 Quartet boards are big enough to hold my ideas.  And stick with the the traditional ink Expo markers.  I find the low odor markers to be a bit dry.

 

When I finish a history and exam I always ask parents what they understand about their child’s problem. It’s a critical question. It helps me understand how they see their child.

When answering the question, parents often introduce their comments with, “I know I shouldn’t be on the Internet but…”

Translation: “I know as my doctor you’ve always been my sole source of information but I really want to look around and, quite honestly, I feel awkward admitting it to you.”

It’s an interesting way to open a discussion and it says a lot about where we’re at with patients and where patients are headed (or have already gone). Most importantly it says parents feel embarrassed admitting that they’re working to learn about their child’s problem.

That’s unfortunate.

The medical profession has a long way to go as far as surrendering its stranglehold on information.  It has a longer way to go in helping patients achieve online health literacy. And while much of what’s available to patients may not represent anything worth seeing, our recognition of their drive to participate is the first step in accepting them as thinking partners in a healing relationship.

 

I recently discussed endoscopic biopsy results with a patient’s mother. Her child had inflammation in the upper intestinal tract with cells called eosinophils. As I began to explain the basics of tummy irritation and the significance of the eosinophils in her daughter’s duodenum she cut me off, “Actually doctor, you don’t need to go into too much detail, just spell ‘eosinophil’ for me if you would.”

As it turns out mom was more interested in getting to Google than listening to how I think her daughter’s biopsy results related to her problem.

I wasn’t put off or irritated. There was once a time when I would have been. I did feel compelled, however, to help her understand what she would find online when searching for eosinophils and how that information may or may not be applicable in this case.

Having faced this scenario hundreds of times I know what parents are going to find when they search for eosinophils, how they will confuse information on adult and pediatric disease, what they’ll be concerned about and what test they’ll ask me to run on the first follow-up visit in the office. So I address it all up front. Call it preemptive online health literacy. Time consuming you say? Not as time consuming as letting patients wander aimlessly.

The internet isn’t going anywhere. If anything, the web’s capacity to support patients will only improve. As medical professionals we have to be competitive with the infosphere. And the only way to remain competitive is to offer something that isn’t readily available. Our greatest strength comes in understanding individual patients, their problems, their fears and their agenda. Google fails on this task. With the right relationship and a thorough understanding of the human reaction to illness, we can coach, direct, and leverage the power of the online information. This is how we stay relevant.

 

“I know you don’t like it when patients use the Internet”

I hear this every day from parents who sheepishly admit that they’ve been trying to learn something about their child’s condition. It’s unfortunate really because patients have been conditioned to believe that they shouldn’t be educating themselves. And when they do they are berated as not acting in their own best interest or the interest of their child. Talk about a conflict.

But from the provider perspective it’s easy to view the infosphere with cynicism. Much of what patients read comes from unreliable sources.

So what’s a provider to do? Perhaps doctors could ‘prescribe’ web resources for their patients much like they prescribe medication. Required, vetted reading for a patient’s condition should be part of the treatment plan.

This can be done with a Delicious or Twine page. Bookmarked sites can be annotated with a doctor’s own personal commentary and tagged for easy retrieval. Patients can visit your Delicious page, pull links tagged for ‘remicade’, for example, and read ten or so of the best pieces of patient-friendly, accurate information on anti-TNF.

While patients will always wander to check out what they want, they need a stake post for Internet exploration. And then doctors couldn’t blame them for accessing bad information.