Categories

Tag: Patients

* Patients Not Included

A few weeks ago, I went for the first time to Stanford’s Medicine X conference. It’s billed as a conference that brings a “broad, academic approach to understanding emerging technologies with the potential to improve health and advance the practice of medicine.”

Well, I went, I saw, and I even briefly presented (in a workshop on using patient-generated data).

And I am now writing to tell you about the most important innovations that I learned about at Medicine X (MedX).

They were not the new digital health technologies, even though we heard about many interesting new tools, systems, and apps at the conference, and I do believe that leveraging technology will result in remarkable changes in healthcare.

Nor were they related to social media, ehealth, or telehealth, even though all of these are rapidly growing and evolving, and will surely play important roles in the healthcare landscape of the future.

No. The most remarkable innovations at MedX related to the conference itself, which was unlike any other academic conference I’ve been to. Specifically, the most important innovations were:

  • Patients present to tell their stories, both on stage and in more casual conversational settings such as meals.
  • Patient participation in brainstorming healthcare solutions and in presenting new technologies. MedX also has an ePatient Advisors group to help with the overall conference planning.

These innovations, along with frequent use of storytelling techniques, video, and music, packed a powerful punch. It all kept me feeling engaged and inspired during the event, and left me wishing that more academic conferences were like this.

These innovations point the way to much better academic conferences. Here’s why:

The  power of patient presence

I wasn’t surprised to see lots of patients at Medicine X, because I knew that the conference has an e-patient scholars program, and that many patients would be presenting. I also knew that the director of MedX, Dr. Larry Chu, is a member of the Society of Participatory Medicine. (Disclosure: I’ve been a member of SPM since last December.)

I was, on the other hand, surprised by how powerful it was to have patients on stage telling their stories.

How could it make such a difference? I am, after all, a practicing physician who spends a lot of time thinking about the healthcare experience of older adults and their caregivers.

But it did make a difference. I found myself feeling more empathetic, and focused on the patient and family perspective. And I felt more inspired to do better as a physician and as a healthcare problem-solver.

In short, having patients tell their stories helped me engage with the conference presentations in a more attentive and meaningful way.

Now, some will surely be tempted to wave this off as a gauzy touchy-feely experience that is peculiar to the fruit-cakes of the Bay Area; a nice conference touch that isn’t materially important to the purpose of an academic conference.

Continue reading…

In Medicine, More May Not Be Better

The dull whir of the computer running in the background seemed to have gotten louder as the patient fell quiet. She was a young woman, a primary-care patient of mine, seeking a referral to yet another gastroenterologist. Her abdominal pain had already been checked out by two of the city’s most renowned gastroenterologists with invasive testing, CAT scans and endoscopic procedures.

But she wasn’t satisfied with her diagnosis — irritable bowel syndrome — or the recommended treatment and wanted a third opinion. I tried to reason with her but failed to convince her otherwise. Even when I acquiesced and gave her the referral, she walked out visibly unhappy. I sat there listening to the whirring, feeling disappointed.

Physicians love being liked. They also love doing their jobs well. With other incentives, such as monetary returns, dwindling, the elation we get from satisfying a patient as well as providing them good care is what still makes being a doctor special. But is keeping patients satisfied and delivering high-quality care the same thing? And more important, can patients tell if they are getting good care?

Policymakers certainly think so. In fact, under the Affordable Care Act, Medicare, and Medicaid hospital reimbursements are now being tied to patient satisfaction numbers.

But the association between patient satisfaction and the quality of care is far from straightforward, and its validity as a measure of quality is unclear.

In fact, a study published in April and conducted by surgeons at the Johns Hopkins School of Medicine showed that patient satisfaction was not related to the quality of surgical care. And a 2006 study found that patients’ perception of their care had no relationship to the actual technical quality of care they received. Furthermore, a 2012 UC Davis study found that patients with higher satisfaction scores are likely to have more physician visits, longer hospital stays and higher mortality. All this data may indicate that patients are equating more care with better care.

Although patients and their physicians generally have similar goals, that is not always the case. As a resident, who is not paid on a per-service basis, I have no incentive to order extra testing or additional procedures for my patients if they’re not warranted. But one study found that physicians who are paid on a fee-for-service basis and therefore have an incentive to deliver services — needed or not — are more likely to deliver these services (such as an MRI for routine back pain).

On top of that, as another study found, they also are more liked by their patients. It is no wonder then that the number of patients with back pain, one of the most common reasons for physician visits, are increasingly being overmanaged with MRIs and narcotic pain medications.

Continue reading…

The Great Coronary Angioplasty Debate: Giving Patients the Right to Speak

Earlier this month, the editors of THCB saw fit to post my essay, “The End of the Era of Coronary Angioplasty.”

The comments posted on THCB in response to the essay, and those the editors and I have directly received, have been most gratifying. The essay is an exercise in informing medical decisions, which is my creed as a clinician and perspective as a clinical investigator.

I use the recent British federal guideline document as my object lesson. This Guideline examines the science that speaks to the efficacy of the last consensus indication for angioplasty, the setting of an acute ST-elevation myocardial infarction (STEMI). Clinical science has rendered all other indications, by consensus, relative at best. But in the case of STEMI, the British guideline panel supports the consensus and concludes that angioplasty should be “offered” in a timely fashion.

I will not repeat my original essay here since it is only a click away. The exercise I display is how I would take this last consensus statement into a trusting, empathic patient-physician discourse. This is a hypothetical exercise to the extent that little in the way of clear thinking can be expected of a patient in the throes of a STEMI, and not much more of the patient’s caring community.

So all of us, we the people regardless of our credentials, need to consider and value the putative efficacy of angioplasty (with or without stenting) a priori. For me, personally, there is no value to be had rushing me from the “door to the balloon” regardless of the speed. You may not share this value for yourself, but my essay speaks to the upper limits of benefit you are seeking in the race to the putative cure by dissecting and displaying the data upon which the British guideline is based.

There is an informative science, most of which cannot deduce any benefit and that which deduces benefit finds the likelihood too remote for me to consider it worth my attempt. A hundred or more patients with STEMI would have to be rushed to the catheterization lab to perhaps benefit one (and to harm more than one).

Continue reading…

My Personal Affordable Care Act–A Manifesto

The Founding Fathers had one.  Karl Marx had one.  Bertrand Russell and Albert Einstein had one.  And, now I have one: a manifesto, declaring my intent to live my life with as little interaction as possible with the US health care system by doing what the Affordable Care Act (ACA) tells me by omission I do not need to do: take responsibility for myself.

This is my Personal Affordable Care Act.

My manifesto is an algorithm for thriving in spite of the government’s naked and absurd attempt to define health as something that begins in the clinic.  My goal is to make myself and my family as scarce as possible within the health care system.

The ACA is a collective solution to the mass failure of individual will.  Our transformation into an information culture actually worsened the malady.  We are so conditioned to success at the speed of a search engine that, like the person who aspires to retire early, but refuses to save, we’ve forgotten to manage the fundamentals.

First, that every healthy lifestyle decision you make today, from diet and exercise to outlook and mood, requires thought and an exertion of will.  Even in the age of Google, volition matters, and choosing not just wisely, but strategically, is an option available to most people.

Second, despite revolutionary democratization of medical information, we still don’t do our homework.  Americans visit physicians 3 times per year on average, and the number one reason for the visits is “cough.”  Really?  You need to go to the doctor for a cough?  Unless you have a fever, chest discomfort, bloody sputum, or the cough lasts for weeks and keeps you up at night, it is almost certainly viral or related to an allergen and self-limited.

Continue reading…

Should We Sacrifice Medicine’s Sacred COW?

Chicago Cubs fans of a certain vintage will never forget broadcaster Harry Carey’s signature line, “Holy cow!”  Some have speculated that the exclamation may have originated in Hinduism, one of the world’s major religions, whose adherents worldwide number approximately one billion.  Hindus regard cows as maternal, caring figures, symbols of selfless giving in the form of milk, curds, butter, and other important products.

One of the most important figures in the faith, Krishna, is said to have been a cowherd, and one of his names, Govinda, means protector of cows.  In short, cows are sacred to Hindus, and their slaughter is banned in virtually all Indian states.

Medicine, too, has its sacred cows, which are well known to physicians, nurses, and patients visited by medical teams on their hospital rounds.  In this case, the cow is not an animal but a machine.  In particular, it is the computer on wheels, or COW, a contraption that usually consists of a laptop computer mounted on a height-adjustable pole with a rolling base.  It is used to enter, store and retrieve medical information, including patients’ diagnoses, vital signs, medications, and laboratory results, as well as to record new orders.

As the team moves from room to room and floor to floor, the COW is pushed right along. The COW is often treated with a degree of deference seemingly bordering on reverence.  For one thing, people in hallways and patients’ rooms are constantly making way for the COW.  As an expensive and essential piece of equipment, it is handled gingerly.  Often only the senior member of the medical team or his or her lieutenant touches the COW.

Others know that they have said something important when they see the chief keyboarding the information into the COW.  Sometimes it plays an almost oracular role. When questions arise to which no one knows the answer, such as the date of a patient’s admission or the time course of a fever, they often consult the COW. Just as cows wandering the streets of Indian cities often obstruct traffic, so healthcare’s COWS can and often do get in the way of good medicine. Continue reading…

The End of the Era of Coronary Angioplasty

In a single generation, the evidentiary basis for the practice of medicine has grown from a dream to a massif. No longer need physicians rely solely on experience and opinion in formulating diagnostic and therapeutic approaches to the care of the patient.

However, for any given clinical challenge, the available science is never flawless, monolithic or comprehensive, nor is it likely to be durable in the face of newer studies.

The international medical community has mounted two approaches to sorting the wheat from the chaff: One targets the doctor in convening committees to formulate guidelines for patient care. The other targets the patient for evaluating options, so-called informed medical decision making. Both approaches are now sizable undertakings clothed in organizational imprimaturs and girded by self-promotion.

But they are largely parallel undertakings with work products that can cause considerable cognitive dissonance on the part of the patient and the physician. In a recent article in the British Medical Journal [1] the Guideline Development Group convened by the National Institute for Health and Clinical Excellence (NICE) summarized the thinking behind the guidance it was offering regarding the management of STEMI. This is an object lesson in such cognitive dissonance.

Continue reading…

Target Demographic

He seemed a bit grumpy when he came into the office.  I am used to the picture: male in his early to mid-forties, with wife by his side leading him into the office to “finally get taken care of” by the doctor.  Usually the woman has a disgusted expression on her face as he looks like a boy forced to spend his afternoon in a fabric store with his mother.  My office is the last place he wants to be.

He let himself down on the couch across from my desk with a wince, belying the back pain that brought him here.  He looks around at my office, which is not only a place he didn’t expect to be, but not what he expects a doctor’s office to look like.  First there’s the sofa he is sitting on, which is where my patients spend most of their time during their visits.  Then there is my guitar just behind me.  He and his wife comment on how their daughter would love the fact that I have a guitar, as she is into acoustic guitar music.  Then there’s me, wearing jeans and an untucked button-up shirt, sitting back in my chair and chatting like an ordinary person.  He seems intrigued.

He owns a business, which is a service type business like mine.  Like me, he and his wife choose to do things differently, charging less for folks who can’t afford it.  I chat with him about the stress and strain of owning and running a small business, pointing out how his choice is similar to mine.

He had actually suggested coming to me after he had seen me on television, but obviously had initial doubts as to the accuracy of the report.  Spin happens.  But as we talk, there is much to find in common, and he warms up.  His shoulders relax, he sits back on the couch, and forgets he’s in the doctor’s office.

Continue reading…

Healthcare’s Tech Disconnect: Why Aren’t We Building the Products Patients Really Need?

Having been supported by several small business grants from the National Cancer Institute to create online interventions for cancer patients, I have been learning gradually about commercialization models to get our work out to the public. I am dismayed about the major disconnect between eHealth entrepreneurs and eHealth intervention researchers (my personal reference group).

Last year I attended Stanford Medicine X and last week I did a demo of one of our web sites at Health 2.0 in Santa Clara. Both times, I was struck by the assumption in the IT developer and consumer community that giving people realtime feedback about their health will automatically result in major positive changes in behavior, not to mention cost savings for insurers.

The Connected Patient movement seems particularly naïve to me. Psychologists have been using self-monitoring, i.e. recording behaviors such as smoking, eating, and exercise, for at least 30 years to promote behavior change. First we used paper-and-pencil diaries, but researchers like Saul Schiffman quickly adapted the first handheld computers to prompt people to record their behaviors in realtime, greatly increasing the accuracy and power of self-monitoring.

As technology has advanced, so have our means of self-monitoring. Overall, however, the technology matters far less than the procedure itself. For most people, tracking their smoking, calories, mood, or steps does change unhealthy behaviors somewhat, for a limited period of time. A small group of highly educated, motivated people is more successful in using self-monitoring to make larger, more lasting changes.

I was reminded of this last year in a seminar on tracking at Stanford Medicine X, when a concierge physician from San Francisco and several of his patients talked about being empowered to change their health by using feedback from various types of sensors. One had paid out of pocket for a continuous blood glucose monitor since his insurance would not cover the costs to use it for his Type II diabetes.

Another doggedly demanded access to the data from his cardiac defibrillator. They believed their experiences heralded a sea change in health care in the United States. I am all for empowering patients with knowledge, tracking tools, and social support.

However, if knowledge and feedback was all it took to change unhealthy behaviors, psychologists would be superfluous in the world.

Continue reading…

Why Badly Designed iPad Apps Put Patients at Risk: EMS and ePCR

Everyone who knows my writing can attest that I neither pull punches nor play politics. It may distress people, and hopefully it won’t harbinger my demise.  But as CEO of a young firm bringing overdue innovations to the Fire and Emergency Medical Services industry, there are only four groups to whom I am duty-bound: our partner-clients, their patients, our team members, and our investors (in no specific order).  To remain mum on topics that could affect the physical or financial health and wellbeing of any of these parties would be a disservice.

When I was in the magazine business, I often used the phrase “Respect the medium.”  The meaning was simple: when every industry player surfing the waves of innovation is trying something new, how many are asking whether the form is appropriate to the intended function?  What changes need to be made to magazine’s font so its text can be read clearly on a small, backlit screen?  What interactivity can be embedded into a digitally delivered? How will the user’s experience change when network access is down?  (In February 2012, I wrote about these topics for Electronic Design Magazine.)

Failure to ask these questions is often the downfall of the delivery method: either the medium changes or its use declines; rarely do customers acclimate.  In the publishing world, if your readers ignore you, you go away—no lasting harm or foul.  Not so in healthcare or public safety. Especially during emergencies, if a product fails to work as intended—or to work at all—it can mean lost productivity, mountainous legal fees, brain death, or loss of life, limb and property.

Healthcare IT offers outsized benefits to Emergency Response teams, which depend on speed, ease of training and use, data accuracy, and interoperability.  But the stakes of failure or disruption are so high that one can say there are few areas of development with a more desperate need for criticism.

Continue reading…

Still Demanding Medical Excellence

Forget for a moment the familiar scenes of action and outraged reaction that are playing out in our long-running national debate over how best to provide access to health care for every American. Instead, ask one simple question: what happens in the doctor’s office or hospital once access is achieved.

I set out to write a book addressing that question almost twenty years ago. I thought myself well qualified: I’d written about health care for a decade for the Chicago Tribune while receiving various awards and other recognition. But it didn’t take long for a painful realization to set in of how naïve I really was.

Digging through hundreds of studies, articles and other first-hand sources stretching back for decades, I was stunned to discover that repeated evidence of unsafe, ineffective, wasteful and downright random care had had no effect whatsoever on how doctors treated patients. Literally none. Moreover, the few professionals who understood this truth couldn’t talk about it in public without endangering their careers or engendering vitriol from peers.

Fortunately, I had no academic or clinical career to imperil. In the conclusion to Demanding Medical Excellence: Doctors and Accountability in the Information Age, I gave vent to anger and indignation. I wrote:

From ulcers to urinary tract infections, tonsils to organ transplants, back pain to breast cancer, asthma to arteriosclerosis, the evidence is irrefutable. Tens of thousands of patients have died or been injured year after year because readily available information was not used ­– and is not being used today – to guide their care. If one counts the lives lost to preventable medical mistakes, the toll reaches the hundreds of thousands.

The only barrier to saving these lives is the willingness of doctors and hospital administrators to change.

Demanding Medical Excellence came out in October, 1997. What progress has been made since then, and where we have fallen short? I address that question in a short article, “The Long Wait for Medical Excellence,” in the October, 2013 issue of Health Affairs. The purpose of this blog entry is to recap some of what’s said there (for you non-subscribers) and to add a few impolite observations that don’t jibe with the rules of a peer-reviewed journal.

Continue reading…

Registration

Forgotten Password?