Tag: Narrative medicine

A Brief Introductory Course In Personalized Medicine: Read the Chart!

While we’re busy debating the pros and cons of clinical genome sequencing and tossing around buzzwords like “personalized” and “translational” medicine, I’ve recently caught some health care providers ignoring the archaic skills of communication and common sense. So while we await genome analysis apps on our smartphones and DNA sequence annotators in our doctors’ offices, here are 3 suggestions on how to provide personalized medicine right now:

1. Read the patient’s chart (paper or digital)

2. Listen to the patient

3. Look at the patient

Disclaimer: Today’s blog is anecdotal and non-scientific, but may identify a trend.

My Missing Thyroid

A few weeks ago, I had a long-overdue check-up, with a nurse practitioner. It was my first visit to the practice, which had provided excellent urgent care.

On the medical history form, I described my circa 1993 thyroid cancer in intimate histological detail: papillary in left lobe, follicular in the right.

The NP spent an impressive 45 minutes asking questions and listening to me – or so I thought. During the brief physical exam, I told her all about my thyroid cancer, my daily Synthroid dose, and even brought her hand to my throat, having noticed that dentists get very excited at my lack of a thyroid gland. No thyroid tests needed, said I. My endocrinologist had recently done them.

So I was surprised when, early the next morning, a Saturday, my cell phone quacked.

Continue reading…

The EMR and the Case of the Disappearing Patient

The electronic medical record (EMR) is here to stay. Its adoption was initially slow, but over the past decade those hospitals that do not already have it are making plans for implementing it. On the whole this represents progress: the EMR has the ability to greatly improve patient care. Physicians, as well as all other caregivers, no longer have to puzzle over barely legible handwritten notes or flip through pages and pages of a patient’s paper chart to find important information.

With the EMR, it is easy to see what medications a patient is taking, when they were started, and when they were stopped. Physicians can easily find key vital signs – temperature, pulse, respirations, and blood pressure – plotted over any time frame they wish. All the past laboratory data are displayed succinctly. But it is not all gravy.

There is a Problem

I use the EMR every day, and I am old enough to have trained and practiced when everything was on paper. While overall, I am happy to have electronic records, there is a problem: The EMR is trying to serve too many masters. The needs of these various masters are different, and sometimes they are incompatible, even hostile to one another.  These masters include other caregivers, the agencies paying for the care, and those interested in medico-legal aspects of care.  What can happen, and I have seen it many times, is that the needs of the caregivers take a back seat to the needs of the payers and the lawyers. The EMR is supposed to improve patient care, but sometimes it makes it worse. Physician progress notes illustrate how this happens.

Continue reading…

Not Everything that Counts Can Be Counted

Have you ever wished that instead of choosing a single answer on a multiple choice exam you could write an essay instead to show how you are thinking about the question? It happened to me many times, particularly on my medical board exams, where the object seemed more to guess what the question writers were thinking than to get at the depth of my knowledge. And even though each question typically had a menu of 5 possible answers, the message was binary: right vs.wrong. There was never room for anything between these two extremes. Yet this middle ground is where most of our lives take place.

This “yes/no” is a digital philosophy, where strings of 0s and 1s act as switches for the information that runs our world. These answers are easily quantifiable because they are easily counted. But what are we quantifying? What are we counting? Has the proliferation of easily quantifiable standardized testing led us to more and deeper knowledge? I think we all know the answer to that question. Yet are heading in the same direction with electronic medical data? Let me explain what I mean.

There was an interesting discussion yesterday on a listserv I am a part of about structured vs. unstructured (narrative) clinical data. I don’t often jump into these discussions (believe it or not), but this time I had to make my views heard, because I believe they are similar to the views of many clinicians.

Continue reading…

Rating or Narrating, that is the question.

This April 6–7, the Health 2.0 Europe conference will feature the many ways in which Web 2.0 tools are providing innovative solutions to, amongst others, our fundamental need for self-expression, known more recently as “user-generated content”.

Several panels will refer to these issues, but we will focus in this post on the Hospital and Payers’ panel. Payers want to ensure that their patients are being oriented to good care. Hospitals want to know that they are being considered “justly”. The Health 2.0 panel will include demonstrations by Guide Santé (France) and Patient Opinion (UK), both web 2.0 sites created by physicians concerned by patient satisfaction with hospitals and clinics. Payers like the UK NHS and Big-Direkt from Germany will participate in the conversation and Big-Direkt will also demo their new online tools.

Rating sites in health are high profile in France, especially amongst those who are rated and some early entrants have bit the dust for methodological reasons. Rating sites, however are not all identical and they are certainly not alone in capturing the patient experience. They live alongside online story telling or narrative tools, deployed in a variety of ways on sites that will be featured in Paris from a dozen countries.

How did all of this come about?

A quick review of the world of hospital ratings will remind us that consumers and professionals have long been seeking comparative guides to the quality of hospitals. Twenty years ago, US News and World Report launched its  “best hospitals” special issue, and so the concept of comparative hospital ratings for consumers was born. Such “best of” lists quickly became popular, despite the lack of consensus on the choice of quality indicators. In France, so many of the major national dailies and weeklies provide “best of” lists that new ones come out throughout the year and create a certain level of confusion since the institutions listed are never quite the same.

In the US, the HealthGrades Annual Hospital Quality and Clinical Excellence study examines patient outcomes at all 5,000 nonfederal hospitals in the United States, based on 40 million hospitalization records obtained from the Centers for Medicare and Medicaid Services. In the most recent HealthGrades study released on Jan 26 2010, “hospitals rated in the top 5% in the nation by HealthGrades have a 29% lower risk-adjusted mortality rate and are improving their clinical quality at a faster pace than other hospitals.”

With the arrival of Web 2.0 technologies, the first generation of hospital comparison tools took the form of rating sites; consumers would express their opinions essentially through response to multiple choice questions regarding their degree of satisfaction. At the same time other  tools made it possible to pursue the narrative approach via the posting of the “patient story.”

According to Wikipedia, Narrative Medicine is actually “a practice of medicine, with narrative competence and marked with an understanding of the highly complex narrative situations among doctors, patients, colleagues, and the public.” Narrative Medicine aims not only the validate the experience of the patient, but also to encourage creativity and self-reflection in the physician. Patient narrative of course, does not necessarily imply the contribution of anyone other than the patient!

Dr Paul Hodgkin, the founder of Patient Opinion is an NHS physician who still practices part-time. He wanted to give patients a place to express their personal stories and to enable the story to reach the managers of the establishment concerned by the story. According to Dr Hodgkin,

“We now understand that the experience of being a patient, far from being peripheral to health care, is actually central to understanding the effectiveness and efficiency of services, and how they can be improved. Because the author is unconstrained by pre-set questions, they may tell their story in ways that suit them, and address whatever they see as important. Sometimes a single story will motivate staff and managers to take immediate action to put something right. And it is often the case that the patient themselves, through their experience, sees clearly how a problem could be avoided or put right. We can now make a contribution – small or large – towards co-creating, with professionals and other patients, better care, better services, and perhaps even better professionals and better policy. And as we do this, we will see the health care system itself slowly shift to becoming more transparent, more responsive.”

As the narrative approach develops in popularity, does this mean that the end is in sight for rating sites? Not really. There are several well-known rating sites in the US and many sites including a rating feature. In France, while firmly in the “rating category” although still including commentary, Guide Santé is the only such site to have experienced significant development to date. Drs Del Bano and Bach of Marseilles, the founders, are former directors of a clinic and public health specialists. Their past experience has helped them from falling into the many pitfalls of rating methodology and policy.

Drs Del Bano and Bach’s goal was to launch a successful hospital comparison web site, based on a mix of user-generated content and government data. They cite three problems that explain the attraction of le Guide Santé.

“The French national health system evaluation data on hospitals is not accessible to consumers.  It does not allow the comparison of establishments on a same criterion. Up until the launch of Le Guide Santé, there was no French survey site where patients could anonymously report on hospital quality. We offer both the right to rate the establishment and to comment on it.”

Le Guide Santé is launching its V2 in the near future and has become the exclusive supplier of benchmarking information for one of France’s key digital and paper properties, “Le Figaro”.

Oh yes, and when asked the question, both sites Patient Opinion and Guide Santé report having published nearly all stories and comments that have been submitted.

We hope you’ll join us for the conversation at Health 2.0 Europe.

Denise Silber of, Basil Strategies is Health 2.0’s European partner. Basil Strategies is based in Paris, where the Health 2.0 Europe Conference will be held on April 6–7.