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.

There’s a conversation brewing over use of the term ‘e e-patient.’  The online health revolution is over, it’s been suggested.  Web use, after all, has become so widely adopted  that the term ‘e-patient’ may have more historical meaning.  Dropping the ‘e’ might indicate that we’ve arrived.

I’m not so sure.

Perhaps the revolution we thought was going on never entirely took off.  Or maybe it’s all about how you define the revolution.

Here’s what I see:  Day in and day out over weeks and months hundreds of patients visit my clinic.  I talk to them candidly about the tools they use and how technology and community is changing how they see their problems.  I do the same with friends and family members.  And like it or not, they’re a lot closer to 1.0 than many of us would like to think.

Crowdsourcing, record portability, user-generated health and even simple patient communities are things that many are likely unable to define, and even less likely to use.  I’m saying nothing of their capacity.  Many patients I speak with have no idea of their capacity.  And empowerment is irrelevant to a patient unaware of their potential.

We need to be careful not to assume that the voice of a remarkably engaged minority of patients represents the voice and understanding of patients everywhere.

There’s a lot more work to be done before claiming any kind of victory.  I wouldn’t be quick to drop the ‘e’ in e-patient and may suggest that in many cases it has yet to be added.

I recently got into a discussion with a couple friends about doctors and blogging.  Why don’t we more doctors out there?  Of the hundreds of thousands of doctors I’d expect more taking a voice.  Even during the U.S. health care reform debate.  Crickets.

Of course there are doctors who blog, but the numbers are slim.  What’s behind it?

Passion.  Pushing great content requires a passionate interest in changing ideas and making a difference.  There’s malaise in medicine right now.  Margins are slim.  Physicians are losing control of what’s happening around them. The fire in the belly that drove so many doctors to choose medicine has given way to a preoccupation with survival.

Late adopters.  Most doctors think a blog is something that deviant teens do on a cell phone.  There’s endemic ignorance in the medical community surrounding social technology.  Can we teach ‘em?  Maybe.  But I think this is a generational issue that will work itself out with time.  The use of social technology to facilitate dialog between doctor and patient will evolve over the next several years as 1) technology evolves and 2) digital communication becomes a standard.  Keep in mind that many of us still work with doctors who grew up using rotary phones.

They don’t need the business. Sure there are the tummy tuckers and the lapband docs who are lobbying for customers.  But for most primary care doctors, the market is such that more patients doesn’t necessarily add up to a healthier bottom line.

They don’t have a business.  Physician practices are folding faster than beach chairs at high tide.  Consolidation of medical business will mean that personal and practice branding will take a back seat to hospital and clinic marketing.  If it hasn’t happened already, your small town solo practice doctor will be working 9-5 under a hospital or large managed group.

Blogs are so…2000. Communication is moving closer to real time.  The revolution that started as Moveable Type has given way to new platforms.  Blog entries are becoming shorter and lifestreaming applications like Posterous gaining ground.  I see more physicians finding their voice in the fast moving streams of Twitter and Facebook.  Maybe these better suit the mindset and lifestyle of today’s doctor.

As the medical profession is redefined and resurrected expect excited, passionate voices to emerge.  I’m just not sure that the weblog will be where those voices will live.

I can’t get Wes Fisher’s post from yesterday out of my mind.  When the Doctor’s Always In talks about the creeping expectation of physician availability.  Newer, more efficient forms of media and communication have created the belief that doctors should be available nearly instantly and all the time.

It started with the pager and it’s evolved to real-time social media.

I’ve seen it too many times:  Physicians excited to please open the door to unlimited patient email only to see themselves shutting their families out at night as they answer questions – all for free.  And those physicians who suggest that emails should carry a fee are indicted for greed.

One problem is that health care is increasingly seen as a commodity without real costs.  Look at the recent attempt by legislators to cut Medicare 21% from providers who have already shaved their margins to practically nothing.

(Of course, the medical community’s lack of commitment to political action doesn’t help.)

When I speak I’m often asked why we don’t see more physicians in the social space.  Here’s why:  Outreach and engagement using new forms of social communication requires passion and energy.  Most physicians I know are too busy trying to keep their doors open to worry about messaging via social media.  The operation of a business in survival mode doesn’t make for cheery engagement.

Physician time is becoming increasingly devalued.  Once this issue is addressed, don’t be surprised if you see your primary care doctor launching a show on Ustream … after hours, of course.

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.

They say transparency’s king. The more you share the better you look. But I’ve got rules. Here are a few things you won’t find in my Twitter stream:

Beer. I was recently speaking at a meeting out of town and caught up with some friends at the end of the day to visit and have a beer. I was in a different time zone and noted on Twitter the specific microbrew I was enjoying. The following week in my clinic a parent commented on my social activity. While I’m no stranger to transparency, the realization of my visibility was eye-opening. It reminded me that everyone’s watching and 140 characters doesn’t offer enough space to explain the why, or the time zone, of what I’m doing. So I’ve sworn to keep activities like beer consumption out of my twitter stream.

My kids. I try to keep my children out of my social footprint as much as possible. But as most of you who follow me know, they sneak their cute little selves in on occasion. It’s unfortunate because everybody loves hearing about my kids. This is at the request of my wife who’s a booger about privacy. I do mention the occasional date night with my daughter but, by and large, you won’t hear much. Kids are great jumping off points for personal digression but we have to be careful about using them to our own advantage.

Patients. With the exception of broad examples or aggressively deidentified stories I try to keep patients out of my social dialog. They creep in occasionally because they’re such a huge part of my world but typically I catch myself.
Their circumstances are their property and to use that without their expressed permission is a violation of their trust – even if HIPAA compliant.

Work grievances. Sure I’ve got problems in my clinic just like every other doctor in the free world. And I love to vent on occasion but I try to keep it off-line. My community’s got nothing to gain from it and no one likes a negative Nelly (or Nelson in my case).

Bad language. Don’t tweet anything you wouldn’t say in front of the Virgin Mary. Again, everyone’s listening. In a tweet this morning from Mike Cadogan, Emergency physician in Perth and author at Life in the Fast Lane, he makes it a rule to avoid “sex, swearing and relationship issues”. Solid advice.

Consumer complaints. I always think it’s in poor taste when a prominent member of the SoMe community broadcasts an isolated negative consumer experience in order to make a company jump (“I’ve got followers. Do as I say or the brand gets it”). In a way it represents journalistic irresponsibility. Your negative experience at the boarding gate isn’t my business and leveraging a large personal network to try to get quick results is a cheap tactic.

I’ll add more as they come to mind.  What do you avoid in your social world?

If you want to see the difference between how doctors and patients think, read Jerome Groopman’s How Doctors Think and Thomas Goetz’s The Decision Tree.

The contrast is striking.

How Doctors Think, while offering a comprehensive review of the cognitive missteps made by physicians, is terminally physician-centric in its analysis of the relationship we share with patients. The Decision Tree, while offering a novel blueprint for self-reliance in health, seems almost sheepish in its recognition that physicians are even really that important. The muted physician cameos of The Decision Tree stand in stark contrast to Groopman’s Harvard-trained Masters of the Universe.

If I had it my way Groopman would tell us about how patients are thinking and Goetz would discuss how doctors factor practically in to the Decision Tree.

Of course a smart editor would never let this happen. Groopman’s readers pine for the stereotype physician hero. Goetz’s readers want the kind of empowerment that leaves physicians in the dust.

But reading, fiction and non-fiction, is ultimately about the fulfillment of fantasy. It’s about how we want to see things and what we want to believe as patients or even physicians. Both books offer generous helpings of red meat to its respective base.

I regularly talk to my patients/parents about social health. What parents do, what they think and how they socially experience their child’s problems has become an interest of mine.

I can hear it now: “Of course patients won’t discuss their social health activities with you, you’re a doctor.” Perhaps, but I don’t think so. Actually, I’ve had some very interesting open dialog with a few of my long-term parents. Many have children suffering with chronic diseases such as crohn’s disease, eosinophilic enteropathy and the like. The relationships I cultivate are open and the nature of my dialog has been just as consistently open as other aspects of our relationship.

Interestingly, while nearly all have used search to understand their disease, most have never connected with other disease sufferers in the online space. The concept of crowdsourcing is met with puzzled looks.

Sure they’re e-patients.  But I would characterize most of my patients as e-patients. The question is, what does that really mean? The definition is admittedly broad. For example, how is an e-patient who simply seeks information online discriminated from the e-patient who seeks the independent capacity to prescribe medications or genuine dependence on the hive to make difficult personal health decisions? To that end, has Health 2.0 really seen adoption once you leave the narrow online reverbosphere of opinion?

As far as social health among the parents of children with digestive diseases in The Woodlands, Texas I might suggest that true engagement is a rarity.

To some extent, I wonder if a lot of the dialog about social health and the mass exodus towards individual empowerment is overstated. Not that it isn’t important or won’t evolve to become more important, I just wonder if those of us who think about this are living in a bubble.

I recently stumbled on the Minimally Disruptive Medicine blog maintained by Dr. Victor Montori from the Mayo Clinic. I have to admit that the name caught my attention so I scoped it out.

According to Dr. Montori, “minimally disruptive medicine refers to the practice of medicine that seeks to design effective treatment programs for patients while minimizing the burden of treatment.” He describes this as an emerging field.

I have to admit that I was simultaneously puzzled and intrigued.

After all, how is this is different from the way good medicine is practiced? I, for one, like to think that I create individually tailored programs that meet my patient’s needs while minimizing their treatment burden. Communication between providers has always been a challenge but long understood as important. And understanding the capacity of a patient to adhere to treatment should be a basic part of fashioning any treatment plan. I haven’t considered any of these elements as part of an emerging field, however. It’s just good care.

But perhaps we no longer offer good care.

The popularization of minimally disruptive medicine may represent an indicator that medicine is much worse off than I realize. Perhaps the disconnect with patients has become so great that the basic role of the physician has been forgotten and needs to be retrained under this branded rubric.

Perhaps we’ve hit rock-bottom and it’s time to rebuild. Minimally disruptive medicine may be an indicator real trouble. Concierge medicine was our first clue that something was wrong (“Pay me an annual fee so that you don’t get lousy care”). Or, alternatively, minimally disruptive medicine may represent a move to reinvent and re-label the way the best of us like to think we have always cared for patients.

Expect to see more reinvention of the kind of patient care that at one point was the standard. Expect such moves to be positioned as the shiny new thing.

If you can access BMJ, Dr. Montori coauthored a nice summary last year that’s worth a peek.  The Mayo Clinic Channel on YouTube has a clip discussing minimally disruptive medicine.

This weekend I visited a small town in west Texas to address a local medical society on the emerging role of social media in health care.

My presentation involves social media and the evolving relationship that patients share with doctors. I discuss challenges and opportunities – especially as it relates to transparency, personal boundaries, and even the ethical obligation to participate in the online conversation. I target the disconnected physician and offer education as well as a compelling argument for involvement.

When I arrived at the venue I found that the meeting was attended predominantly by physicians much older than myself. While waiting to speak I was concerned that my message of connection and changing relationships would elicit pushback. After all, isn’t it this era of physicians we hold accountable for paternalism and control in dealing with patients?

That’s what I’d been lead to believe.

When the floor was opened for comments, the dialog didn’t center on the latest social media platform. There were lots of questions but only one involved Twitter. The focus instead was on what had become of us as a profession. The idea of connecting via social media simply drew attention to what was missing in the younger generation of MDs.

One physician shared his own chaotic experience as a patient. And more than personal frustration, his tone reflected heartbreaking disappointment in a profession that would ever let the patient experience come to where it is today.

At no point did the questions or discussion center around physician control of information or decisions. Never did my illustrations of patient empowerment make anyone indignant.

What I learned from this audience is that physicians were once far more serious about authentic patient connection and advocacy than we give them credit. Many listening worked at the tail end of a time when the relationship with the sick was sacred. The time, effort and passion exerted on behalf of the individual patient is something that’s hard to even imagine in our current paradigm of care. It’s a forgotten piece of medical history.

We’re living among a lost generation in medicine.  A powerless profession disconnected with its base, wanting and needing to do too much, too fast while
dodging the external salvos that have made patient care close to impossible.

I was asked how we bring it back. How do we reestablish that connection with patients? Hopefully I’ll be invited back next year so I can work on my answer.