(How) Should Patients be Present at Medical Meetings?

iStock_000016431625SmallAfter reading Lucien Engelen’s BMJ editorial this past summer, I couldn’t help but think: Should patients be present at all medical meetings?

Or better: Is there ever a time and place where doctors should meet without patients?

The e-patient voice is critical. But, as important, we must think about where that voice best fits. We must move beyond they have to be there to detailing how to leverage patient expertise and experience in physician training. Otherwise it’s just for show.

It’s easy to demand a seat. It’s harder to detail what happens once seated.

Meeting planners looking to understand where patients fit into medical dialogue would do better with granular guidance than a blind mandate for involvement. Of course, mandatory involvement is one way to start a conversation like this.

The question would make for a fantastic panel discussion at a venue such as MedX. The conclusions would make for a brilliant paper that would serve a world looking to work with patients but not knowing where to begin.

image32 – Connecting Doctors, Patients & Images

The following is a sponsored post for image32.  Beyond sponsoring 33c to start this conversation, the words, ideas and thinking below are mine alone.

It happens nearly every week in my clinic: A child arrives for consultation with an x-ray or CT scan on a disk.  I try to open the images on my exam room computer and I can’t do it due to interoperability issues.  Then there are two outcomes: My ability to assess is impaired or the child is exposed to repeated testing with added cost and radiation exposure.

image32_Compilation_v02We can send a man to the moon but I can’t see a sick child’s film.

image32, a start up out of Silicon Valley has a solution that puts me, my parents and other consultants on the same page.  Or in this case the same screen.

It’s simple: Participating doctors or patients upload images into image32’s private cloud.  PHI is scrubbed using i32’s proprietary software.  The images can be shared (and simultaneously viewed) at the discretion of the treating doctor or patient.  This allows doctors to share studies to obtain curbside consultations and expedite patient transfers, all without having to worry about unintentionally revealing identifying patient information.

There’s more to it than that but this product offers a simple but compelling solution to medicine’s endemic problem of silos.

Here’s why I see image32 carving a space in the digital age of medicine:

The future is patient-centered and controlled.  They clearly see the future as centered on the patient.  image32 takes images from the secure, iconic vault of the institutional server and into the hands of the patients and doctors who need them. In addition to falling in line with the general trend of decentralization and patient control, i32’s model pummels traditional barriers to communication and collaboration.

Beyond films.  Images in medicine are not limited to radiographs, of course.  Pictures of eye grounds, EKGs, rashes or anything else captured graphically represent potential fodder for a secure, private platform like image32.

Prepped for new models of patient care.  As doctors continue to get pinched, new models of delivery and consultation are beginning to emerge.  The proprietary technology behind image32 will be difficult to replicate on an individual level, applications like this will serve to connect the world.

Medical education beyond screen shots.  Beyond patient care is how doctors learn patient care.  And we learn by seeing.  image32 is already serving as a space for de-identified images for education.  What’s huge is that an MRI of the spine, for example, can be scrolled through sequentially as a living study with annotations made by a teaching neurosurgeon. When Sal Khan finally makes his move in medical education, a thoughtful source platform for images like i32 will likely fit the bill.  I understand that image32 will soon be embeddable so that sites like Khan, journal sites, or even textbooks will be able to have a fully functional image viewer as an integral part of the site.

Silky smooth UI.  User experience is king.  image32 offers a silky smooth thoughtful interface that’s easy on the eyes and mind.

Images are central to the workflow of modern medicine.  Patients are central to health care.  image32 puts those images into the hands of the patient where they can curate and share on their own terms.  Check it out.

section_easyimage32 (@image32) is the brainchild of neurointensivist Dr. Alex Flint (@neuroicudoc) and CEO Bob Pellican (@BobPellican).  It’s always free to those given access by patients and doctors who use the service.  You can trial image32 here.

Do Patients Have a Right to Understand the EHR?

A Kentucky electrophysiologist created a satirical post recently that positioned the EPIC EHR as a computer game.  Screenshots of platform were used and he was subsequently forced to remove the images.  Wes Fisher caught the story and has the necessary links.  While I didn’t feel that the original post was nearly as clever as it was provocative and snarky, Wes’ pithy analysis broaches some interesting questions about EPIC’s response.  More important than the specifics of this type of public dialog is what’s behind it all.

For me, there’s a broader question that I find interesting: Do patients have a right to see and understand the EHR that their doctors are using to facilitate their care?  And if the patients were to experience a mainstream EHR first hand, how would providers be seen differently?  How would patient advocates see meaningful use?

It’s not a crazy question.  Physicians are often criticized for their attention to the second screen.  And the failure to properly shift our focus from the EHR is always on the head of the doctor.  Yet we never consider the experience of this individual who’s legally and ethically responsible for the collection of the patient’s story.

What if e-Patient Dave were put in the drivers seat of the provider with EPIC?  What if Kerri Sparling were forced to sit and enter her story in Cerner?  And what if it were onstage and live streamed at HIMSS or Medicine X?  It shouldn’t be complicated.  They know their story better than any doctor.

No satire.  Just real people showcasing a user interface.

I suspect that it might lead to an interesting and very contagious public conversation surrounding EHRs and the responsibility of those who create them.

Should Doctors Friend Patients on Facebook?

imgres[I’m creating some physician teaching material and I could use some input on doctor-patient connections on social sites.  What am I missing? What have I overstated]

Should you friend your patients on Facebook, or other social sites?  Or if you’re a medical student on your pediatrics rotation and a young mother friends you, how should you respond?

Here are few things to consider:

It’s not a matter of if, but when.  It’s important to understand that solicitations for connection on public social channels will happen.  The only way to avoid this is to avoid putting yourself anywhere where you can be seen.  This isn’t an option.  At some point you’ll have to face the issue of who you are willing to talk to and when.  Remember that while Facebook may be the most frequently accessed network by millennial moms, you’ll can be approached on Instagram, Pinterest, Goodreads and any number of others.

Here’s what I do.  I’ve chosen to restrict Facebook to generally personal information for friends and close colleagues.  Most of what I share there is from my personal life so when patients make a friend request, I decline.  While there’s nothing there that I have a problem with my patients viewing, they just don’t know me well enough to gain from pictures of my vacation or Christmas morning.

You must get to the idea of how and with whom you see yourself using different applications for dialog.  You must decide where you are going to draw the line with certain people in your life.

It’s important to understand that despite my individual ‘no patient policy’ I still see my Facebook page as very public.  I don’t live under any kind of illusion that this area is a walled off garden for my dark side or hard-edged opinions on politics.  I understand that every picture or comment that I make is one screen grab from my next employer.

I do have a number of patients who follow me on Twitter.  I have no problem with them seeing what I share in technology and doctoring (what my Twitter feed is about).  In fact, my Twitter feed is a type of public curation where I share things.  I have little in the way of public exchange and when it happens, its really transient.  Since few patients curate content and links surrounding technology and the emerging role of the doctor, I follow few, if any, patients.

Honestly, they’ll get over you.  Many of us live with the distorted view that friend requests are rude or awkward to reject.  A lot of doctors I’ve spoken to have concerns that their patients are going to be angry or upset with the rejection.  My experience with patients in this situation is that they completely understand.  Even if they don’t, you have to define what you’re comfortable with and those around you are going to have to accept it.

Think about where you might be able to engage them.  When you tell patients that you’re not willing to connect with them on your personal Facebook page, think where you might be able to engage them.  Remind them, for example, that your practice has a page and you would love to share stuff there.  If you have a patient-focused blog, your comment area may be a place to interact and have dialog.

So rather than planting a flat rejection on the patient who wants to connect, offer them a place to have some interaction with you.

Plenty of doctors let their patients in.  It’s important to understand that you don’t have to restrict your conversations.  I have colleagues who open up their personal world to their patients.  They find that it enriches the relationship they share and feel that it represents the most honest, transparent means of operating in the networked world.  You have to decide what works for you.  Avoid the temptation to do just as I do.

Your institution may make the decision for you.  Many institutions or hospitals have policies that prohibit doctor-patient contact on public networks.  I think that these are problematic since, like the grocery store encounter, it may be difficult to avoid contact in certain circumstances.  I also think that the right kind of contact can be enriching for both a provider and patient.  Most of these policies are driven by the fear that there may be care-specific dialog taking place that can’t be monitored.  While this is a reasonable concern, it can be handled with basic education and training surrounding conversations and context.  There’s no reason why doctors and patients shouldn’t have certain conversations in public, be it at the soccer field or on Twitter.  But, unfortunately, you’re unlikely to change minds anytime soon.  Check with institutional policies and be smart.

Things might be different for students, residents and trainees.  For trainees I would recommend the most conservative posture and avoid relationships.  Remember that when it comes to your deans and program leadership, perception trumps reality.  Even the most appropriate conversations clipped out of context may be perceived as problematic.  Once you are evolved in your career you will be better able to make decisions regarding the kinds of relationships you want and where.  Concerning the young mother who friends you during your pediatrics rotation, simply explain the situation that you don’t connect with patients (or parents).  My experience has been that they always understand.

Book Notes: The Creative Destruction of Medicine

It’s arrived: The Creative Destruction of Medicine – How the Digital Revolution Will Create Better Health Care, Eric Topol’s prescient view of the near future of medicine.

This book details how four areas of digital medicine – wireless sensors, genomics, imaging and health information – are about to undergo a super-convergence marking perhaps the most disruptive period in medicine’s history.  Topol describes a coalescence of “the rapidly maturing digital, nonmedical world of mobile devices, cloud computing, and social networking with the emerging digital medical world of genomics, biosensors, and advancing imaging.”  An overarching theme in The Creative Destruction of Medicine is the inevitable march from population medicine to the science of the individual.

So why is this book is important?

We need to see the future.  Only by understanding the future are we able to plan for the needs of our next medical generation.  I’d like to put The Creative Destruction of Medicine into the hands of every professional medical educator and ask ‘are we preparing the physicians for the work that lies ahead?’  If not, this book should serve as a starting point for a conversation surrounding medical education reform.

It emphasizes the expanding role of the patient.   Medicine is increasingly anchored to the individual.  Creative Destruction makes it very clear that consumers will drive many of the changes currently brewing in health care.  This is perhaps the first book accessible to patients that clearly characterizes the changing face of medicine.  Every patient should read this book in order to understand the rapidly evolving role in they play in their own care.

It brings elements of a manifesto.  Any book that describes the state of the medical profession as sclerotic or ossified should have your attention.  The Creative Destruction of Medicine is a call to action for doctors and patients alike.  We must see our world and our job as doctor and patient very differently.  In a profession so uncertain of its future, we need precisely the vision and critical dialog offered here.  The final chapter confronts the challenges facing the creative destruction and reads like a commencement address.  I read this twice.  Pure gold.

Eric Topol knows what he’s talking about.  And as a master clinician, researcher and communicator, Topol is the man perfectly positioned to tell this story.  It’s this authority and breadth of experience that makes The Creative Destruction of Medicine so plausible.

Buy five copies, read one and gift the other four.  I suspect that 150 years from now when historians are looking back at the most dramatic flexion point in medicine’s history they’ll reference this book as one of the first to identify the start of medicine’s creative destruction.

Join the dialog on Twitter at #CDoM

Amazon links represent affiliate links

Let’s Tell Stories About Medicine and the Internet

I can’t help but think that as time passes we’ll forget about how much medicine has changed with the introduction of the Internet.  We’re witnessing a transition that hasn’t been seen in generations.  We live with the end result but the memory of how we got here is fading quickly.  Like any kind of cultural shift, once we’ve arrived it’s hard to remember what it was like along the way.

How did patients think before the information revolution?  And how did it go down when patients began to search?  How specifically did information clash with the old model of doctor and patient and how did we deal with it?  There are stories here that need to be told.  I think the real stories are in the small details of what went down between doctors and patients. But as early adopters, most of us spend our time looking forward, not back.

I’m trying to record what I remember about the past 10-15 years.  How it went down.  What did I see and how did I feel?  But as a provider I only have half of the story.

It isn’t a formal project but I think it’s important.  I’m having a hard time corralling the concept, packaging it.  If you have ideas about this let me know.

Doctors, Patients and Boundaries

This post from Kelly Young on Howard Luks’ blog asks when patients cross the line with respect to their own advocacy.  It’s worth a peek.

The question of boundaries between doctor and patient is interesting.  All of my patients are empowered in some way.  The extent and level of that empowerment is personal.  On our own there are few lines and little with respect to boundaries.  We have effectively unlimited access to information and resources.  And how far we go to look after ourselves and our kids has few limits.

But when we enter into a relationship with a provider, we’re no longer alone.  It’s unreasonable for a provider to tell a patient exactly how it will be.  It’s unreasonable for a patient to tell a provider exactly how it will be.  Every great doctor-patient relationship is unique and lines that define that partnership need to be identified.  In this context both providers and patients can cross a line that makes the relationship ineffective.  And in this case the other party needs to decide whether the relationship works.

In our working relationships with patients we need to draw lines that define our role.  Good fences, after all, make good neighbors.

Health Care and the Culture of Fear

Fear seems to be a universal theme in healthcare.  I see it everywhere.

Doctors are afraid.  Hospital administrators worry.  Industry jumps at its own shadow.  We fear malpractice, privacy transgressions and issues with federal compliance.  Most of us are afraid of new things.  But what we need most is new new perspectives and new ways of doing things.

Take social dialog, more specifically.  Doctors hide behind fear of lawsuits.  Hospital administrators play the HIPAA card.  Industry plays the a victim of government.

Fear may be the single biggest factor holding us from real innovation in health care.  Patients seem to be the most fearless.  As the recipients of a depersonalized system for so many years perhaps they see themselves as having nothing to lose and everything to gain.  Young people are also fearless – ignorance is bliss.  Perhaps we need to put a bunch of 20-year-old patients in charge of changing health care.

Most of us are afraid of something.  Strategies for health care innovation need to address this culture of fear as a critical first step toward buy-in.

The Disney T-shirt Opportunity

I evaluated a 7-year-old girl with abdominal pain last week.  When I entered the room I noticed that she was wearing a High School Musical t-shirt.

That’s, of course, where I started.

During the first couple of minutes in the room she learned that I have a daughter about her age, I’ve seen High School Musical at least a dozen times, and I know most of the songs by heart (I even hummed a few bars).  The discussion segued into dialog with the parents about the Disney Channel.  They learned about my disdain for its irreverent characters.

None of this was calculated.  It’s just the two-minute drill that transpires during the early stages of a relationship.  It’s a critical first step in establishing trust.  The relationship between a provider and patient is, in many ways, just like any other relationship.

Perhaps most importantly our brief repartee told the child that I understand her.  It told the family about my values with respect to parent-child relationships.  It reflected that I understand how very important a t-shirt can be to a 7-year-old girl.  All critical first steps for helping to facilitate an open dialog.

A good doctor, like a great salesman, understands that making the connection is a critical first step in the ultimate goal of closing.

Helping Parents Manage Uncertainty

How comfortable are we with uncertainty?  I struggle with this question every day.  I treat children with abdominal pain.  Some of these children suffer with crohns disease, eosinophilic esophagitis, and other serious problems.  Some children struggle with abdominal pain from anxiety or social concerns.  I see all kinds.

But kids are tricky and sometimes I can’t pinpoint the problem.  Trudging forward with more testing is often the simplest option since it involves little thinking.  And some parents perceive endless testing as ‘thorough.’

The question ultimately becomes:  When do we stop?  Once we’ve taken a sensible first approach to a child’s problem and judged that the likelihood of serious pathology is slim, when and how do we suggest that we wait before going any further?  This requires the most sensitive negotiation.  It’s about finding a way to make a family comfortable despite the absence of absolute certainty.  This is easier said than done.  Parents can unintentionally advocate for themselves and their worries by insisting on the full court press.  Alternatively they may refuse invasive studies when absolutely indicated.

All of this is for good reason: You can’t be objective with your own kids.

Pediatrics is tricky business and managing parental uncertainty is perhaps my biggest preoccupation.  As I’ve suggested before, sometimes convincing a family to do less represents the most challenging approach.

Image: iStockPhoto

How I Structure a Patient Visit

If you visit my clinic, I follow a structured process during the the encounter.  It’s fairly traditional but has some hidden twists that I think are worth thinking about.

Introduction (provider directed).  During the first few minutes I try to connect and find some type of common ground with the child and parents.  Basic, human stuff.

Landscape of the encounter (provider directed).  I always outline the course of the visit.  Kids want to know what’s going to happen – it puts them at ease.  Parents like hearing that their problem is going to be handled systematically.  I discuss the sequence of history, exam and discussion at the whiteboard.  I remind the parents that I’ll be typing at my EMR during my history and that I will likely have periods where my eye contact is with the screen.

Why are you here (patient directed).  This is a subjective element of the history where the family leads off.  They share why they’re here.  For families accustomed to only 5 minutes with a doctor there can be a tendency to ‘dump’ their history.  A pressured, rapid-fire summary of their story.  If I hear this happening or once I feel they’ve shared the core reason for the visit I’ll ask permission to lead into some specific questions about their complaint.  For patients unclear as to what to say and how much to say, this suggestion is typically taken with relief.  The burden of properly packaging a story can be significant for a nervous mom.

History (provider directed).  I take a fairly focused approach to this part of the visit.  This is where I learn the where, when, why, how of the complaint.  For a child with abdominal pain I may ask as many as 50 questions.  With each answer I create hypotheses that I test with follow-up questions.  This gives me the critical information I need to help understand their problem.  In my line of work, this is where the money’s at.  I finish by asking ‘That was alot of questions…Is there anything that I failed to ask you about that I need to know?”

The patient’s opinion (patient directed).  After I feel like I’ve collected the required objective information I turn the mike over to the family by asking an open-ended question that help me understand their thoughts about the problem.  Depending on the case, I might ask what they understand about what’s happening.  I ask their opinion of the problem – their hypothesis.  Sometimes it’s helpful to find out what worries the parents most.  These questions offer powerful information regarding the patient’s perspective.  It can reveal what’s been called ‘the hidden agenda.’  This dialog usually happens naturally as I’m washing my hands and starting the physical.

Physical Exam (provider directed).  This the touchy feely part that speaks for itself.

Assessment and plan (mutually directed).  I start at the whiteboard with a concise bullet list of key symptoms followed by a discussion of potential issues that could be behind the child’s problem.  I recommend a course of action and we discuss.  A lot of what I do and when I do it is subject to negotiation with a family.

As you can see, I think of two ‘modes’ of direction during the course of the visit:  1) my collection of objective information and 2) the patient’s subjective perspective on their issue.  Both are important and offer balanced control.  But when I’m collecting my information I do it in a methodical, focused way.  When the family is opening up to something it’s their time.  I like to keep the two compartmentalized.  It’s my process.

It’s important that we teach the next generation to think critically about their time with patients.  What I see are young physicians who fail to conduct interviews but rather follow the flow of a patient encounter in a disorganized, meandering way.  “I couldn’t get a word in,” I hear.  “The mother wouldn’t stop talking.”  They seem hesitant to assert themselves.  This leads to an inefficient use of time for both the patient and the provider.

While we fantasize that time is an unlimited resource when it comes to a patient’s needs, reality dictates that time is a resource that must be allocated.

A medical interview needs leadership.  It needs a conductor.