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.

Maybe not according to this report from the CDC.  They studied internet use with respect to adherence behavior and a number of health-related outcomes.  It suggests that folks who diss the doc in favor of the Internet may not do as well as we think.

This quote caught me:

The data also revealed that personal determinants such as neuroticism (reflects anxiety and emotionality) and health-related poorer quality of life differentiated internet-instigated non-adherent respondents from their counterparts.

More plainly put:  If you trust your life to an anonymous guy on twitter with the handle @YourHealthGuru, you might not do as well as if you partnered with a trained professional.

Or perhaps I’m reading too much into the study.

While this would appear to be a turd in the social health punchbowl, we have to be careful about drawing firm conclusions from isolated studies.  There’s a lot to be said for the benefits of community.  But just keep in mind that there’s a chance that it may not be all that we make of it here in our shiny social bubble.

The authors conclude by offering a few tips for health marketing professionals.  Among them:  Avoid fear appeals and message styles that stimulate psychological reactance.

I continue to be really impressed by the work of the CDC.  This study was conducted by the ‘Strategic and Proactive Communication Branch in the Division of Communication Services’.  Didn’t even know we had one.

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.

In a move that may represent a new level of social health organization within large institutions, the Mayo Clinic today announced that it has launched The Mayo Clinic Center for Social Media. Mayo intends to “accelerate effective application of social media tools throughout Mayo Clinic and to spur broader and deeper engagement in social media by hospitals, medical professionals and patients to improve health globally.”

Look for more information in Mayo’s press release which is diplomatically vague while at the same time lofty and enticing.

So what does this really mean?

The Mayo Clinic recognizes opportunity. The opportunity to formally offer comprehensive social media training to hospitals and medical schools is huge.  The Mayo Clinic can and should leverage what they’ve done both to their own advantage and to help create a new standard for providers.  While the details are forthcoming, Aase tells us that Mayo wants to make available its resources, training, toolkits and legal guidelines to fledgling hospitals.

Health care social media isn’t owned by marketing. Mayo’s center may well serve as a solid example of how health care organizations should formalize their social efforts beyond the desolate confines of marketing.  In doing so they can serve as solid proof of social’s real utility in the functioning of a 21^st century medical institution.  I can already picture the reaction in some organizations, “A medical director for social media?”  Just direct them to this video from the Center for Social Media Medical Director, Victor Montori, for some insight on how all physicians and medical execs should be thinking.

One giant step towards the legitimacy of health care social media.  As isolated case studies evolve, we’re becoming more comfortable with social tools as a means of improving health literacy.  Expect medical schools and other institutions to follow suit as the Mayo Clinic forces social media not as an experiment but an expected standard in both education and research.

Look for competition.  While Mayo has set the standard in this arena look to large competing health organizations to replicate their efforts and seize the opportunity for the upside that comes with large-scale seminars and consulting.  There will be increasing competition for dollars as health organizations seek real expertise in moving social media from experiment to core competency.

And one last thing:  As a global leader in the use of social media in health care, perhaps Mayo can initiate the discussion of when media professionals drafting press releases should finally drop the quotes when discussing Twitter “followers.”

Let me know your thoughts.

Last week I wrote about why doctors don’t use LinkedIn. While the post intended to break down why doctors weren’t inclined to use LinkedIn, I never meant to suggest that it can’t be helpful for practicing physicians. Enough people messaged me and commented (here and on Better Health) that I feel I should address the issues of doctors and LinkedIn with a broader perspective.

So how could LinkedIn be important for the average physician?

Dig your well before you’re thirsty. I remember reading Harvey Mackey’s book back in the day which suggested that you should always have options lined up in the event that things don’t work out. Times are definitely changing. Different practice environments and models of care may favor those with an unusual element to their background. The evolution of the health care environment may force you to change what you do. Think about your skill sets and what you’ve accomplished – how does that define you? LinkedIn is a good place to showcase that part of you.

LinkedIn is one element of your digital footprint that you control. Too many physicians are not concerned with their professional digital footprint. That is, the record of stuff that appears when you conduct a
vanity search on Google or Bing. In fact, it’s been suggested that Google has replaced the CV. When I search myself I find interviews and keynotes long forgotten that never made my CV. And unlike other searchable sources, the information on LinkedIn in in your control. Think about LinkedIn as home plate for your personal brand. If you don’t think of yourself as a personal brand, perhaps you should. LinkedIn will force the issue for you.

It’s a place to park your CV. Even if you’re not planning to go anywhere, hospital administrators, physician colleagues and other members of your world should have a place to go to learn a little bit about you. Even if you’re not a career climber, others need to see what you’ve done, where you’ve been, or what your into. If you don’t maintain any kind of digital property (blog, twitter feed), think of LinkedIn as your anchor online. (Note: While you can pull your Twitter feed into LinkedIn, I agree with Chris Brogan and don’t think you should do this.  Alot of our Twitter banter is unrelated to our careers – use LinkedIn status updates to keep your network aware of key speaking gigs or meetings you’re attending.  Then leave it at that.)

Patients might want to look. While I stand behind my assertion that LinkedIn is not a primary factor in how patients choose doctors, consider it a service for those who choose to look. And as suggested in the comments by Adam Nash, VP of the search/platform/mobile for LinkedIn, this could potentially serve as a new site for parking patient recommendations. That would be cool.

My reading list – a window to my soul. Okay, that’s a little dramatic. But one feature that I like about LinkedIn is the Amazon reading list. Over the past couple of months I have began compulsively tracking what I read with brief commentary on what I think about it. You can go there and see what I’m up to. Interestingly I think my list says a lot about what’s on my mind and how I’m thinking. I think it’s a professional way to be transparent while helping people understand who you are. I wish more people did this – I love to know what people are reading.

Remember, it’s a tool, not a game. While there are some who look to amass as many connections as possible, much like followers on Twitter, I use it as a place to collect and track the relationships I’ve developed or want to develop further. I can point to everyone in my network and tell you how I have engaged with them. If you randomly want to connect with me and we have not worked together, met at a meeting, served on a panel together or connected in a meaningful way in the social space, I probably won’t reciprocate. It’s just how I use LinkedIn.

Keep up with your professional world. My weekly summary tells me who’s doing what and speaking where. I typically scan over this when it arrives in my inbox. As the numbers of people in your real network grow, LinkedIn provides provides a great way to keep tabs on career moves.

So there you go. As you can see, I’m a huge LinkedIn fan and I think there are ways that every doctor can benefit from its growing popularity.

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.

I just finished Seth Godin’s Linchpin. Seth makes the case that in a hypercompetitive world the stakes are higher than ever to make an indispensible contribution to something you care about. The linchpin is the essential element, the piece of a wheel or organization that is absolutely irreplaceable.

Seth references business but he might has well have been talking about obstetricians or internists. We need more linchpin doctors.

Modern patient care is progressively marginalizing physicians. Care that is increasingly ‘managed’ and dependent upon automated diagnostics is leaving physicians as powerless cogs in a system of mechanical patient care. Patients have become naturally detached as they search for solutions of their own.

Physicians have to be remarkable to remain relevant. Physicians have to offer something not available anywhere else. Physicians need to make a difference and in their own way and serve as real leaders and innovators in their relationships with patients and their communities.

Physicians have to be linchpins.

Seth offers a cameo to Jay Parkinson and serves him up as a linchpin example. And this is well-deserved. But in reality our linchpins should be in clinics everywhere, defined by their remarkable insights and interactions.

While it’s a bad time to demand passion in medicine, I might suggest that every doctor in America read Linchpin. It provides the critical basis for personal accountability and innovation sorely needed in the medical community right now.

Physicians are at risk of becoming invisible. We can watch and wait for instructions or we can lead.

I used to get lots of gifts from patients during the holidays. Not so much anymore.

I’m more patient-centered than ever. And the older I get the more relaxed I get with my patients. I’d like to think that I’m more likeable. But still fewer gifts than ten or fifteen years ago.

So what gives?

Times have changed. Doctors nowadays are dispensable. If a patient doesn’t like what they’ve got they can move on. But this is probably a good thing. It’s what patients should do.  In the old days there was less of that. We needed a tight relationship with our providers. It was essential. Gifting may have been seen as a means of getting what one needs. Not so much now.

But in this evolving world of patient empowerment is there role for the cultivation of a stronger relationship from the patient’s end?

When it comes to my relationships I care less about cookies and gourmet pears. Intent resonates more with me these days. Much like a handwritten note, which seems to be so much more powerful than twenty years ago.

The world of patient care is changing quickly and not for the better. Caring for the chronically ill is stressful, backbreaking work.  If you’ve got a relationship that works think about pointing out the value in what you’ve got. Gourmet pears aside, remember that a sincere, heartfelt thank-you represents one of the best gifts you can give your doctor.

Read Seth Godin’s most recent post, The Amateur Scientist. In a way that only Seth can do he tells how our culture has turned us all into authorities. Important stuff.

I couldn’t help but think how this applies to the Internet and our health. Unrestrained access to information has got us all thinking we know more than we do.  Godin wasn’t writing about the amateur physician but he might as well have been.

Missing from the black bag of the amateur physician is a tool called clinical judgment – the pivotal substrate necessary to tie together objective clinical information. Clinical judgment is the foundation of good medical decision-making. But you won’t find it on the Internet. It can’t be found in the cloud or the hive. It isn’t free and it’s tough to get.

When it comes to social health there’s remarkably little talk of clinical judgment. It’s an unwelcomed concept. It’s the fly in the jelly of those who dream of using the infosphere to independently map their medical destiny from their laptop.

Sure the cloud may offer us a map. But for anyone who’s been there, the judgment of an experienced Sherpa is priceless.

But I digress…

Check out Seth’s Blog. He’s one of the few original thinkers in a world that seems to value reverberation. I’ve been reading him for years now and his wisdom transcends so many professions. He has a lot to teach physicians … and amateur physicians