Wednesday, September 24, 2008

Who’s Afraid of the Empowered Patient?

Who’s Afraid of the Empowered Patient?

Delia Chiaramonte, MD, Baltimore, Maryland

JAMA. 2008;300(12):1393-1394.

From today's JAMA:

"...Yet patients can be stingy too—stingy with their respect and their gratitude. For all our hard-earned knowledge and personal sacrifice, don't we deserve a little reverence? Of course we do. However,whether we deserve it or not is irrelevant because times have changed. Patients are no longer passive and adoring, and our relationship is no longer hierarchical and paternalistic. It is when we see this change as a demotion, rather than as an evolution, that our hackles get raised.

Rather than being impressed by their patients' empowerment or inspired by their quest for wellness, some physicians are suspicious and occasionally blatantly hostile toward patients who demand an active role in their health care. We physicians enjoy our kingdoms and we don't take kindly to challengers. Yet the occasional physician who embraces her patient's empowerment often discovers a gem—a patient who is engaged, adherent, and motivated to get well."

My favourite part:

"A truly empowered patient is the ideal patient. Empowered patients will challenge us, yes, but they will also take their medicine and go for their tests. They will ask when they don't understand our instructions rather than simply ignoring them. And, most important, they will be more likely to get well, which will make us feel successful....

...Is there a solution? Can physicians and patients get back on the same team? I think we can."

Marina: patients and doctors should be on the same team - not adversaries!

Your thoughts?

Sunday, September 21, 2008

Do Not Forget the Patient: Tyranny of Diagnosis

Do Not Forget the Patient: Tyranny of Diagnosis

From "DB's Medical Rants" opens with this quote:

The concept of disease, Professor Rosenberg writes, has historically focused on the individual — a single person’s experience, story and sense of meaning.

Over the last century and a half, however, medicine has increasingly decoupled disease from the individual. This decoupling has given rise to the concept of precise, objective and quantifiable diagnoses, diagnoses so separate from patients that they seem in many ways to take on a life of their own.

Diagnoses cluster together by specific physiologic mechanisms, signs and symptoms, pathologic findings. They have insinuated themselves into health care economics as DRG’s, or Diagnosis-Related Groups, which drive physician compensation. They have inspired whole subspecialty training programs and huge advances in how we understand and treat them. Think of heart failure, cancer and my own specialty, liver transplantation.

This greater understanding and improved treatment are important and good news for all, no doubt.

Yet along with these great clinical strides, diagnoses have also fomented their own cultural revolution. Diagnoses have changed the way we approach individuals."

His summary: "Great physicians treat patients. We need to refocus medical care on patients, while considering diagnosis as an important but not a trumping factor."

Marina: What are your thoughts?

Friday, September 19, 2008

The EHR discussion

Reading this morning Vince Kuraitis' blogpost, made me realise why I accepted Carlos' very kind invitation to become a guest writer to this blog.

Allow me to briefly introduce myself. I'm Lodewijk Bos, President of the ICMCC Foundation, the only global organisation that deals with patient-related ICT. For more see our website We also bring a well visited news page on medical and care ICT related matters.
Recently I was first author of an article called the impatient patient. And that's how Carlos found me.

Back to Kuraitis' blogpost, called From PHRs to PHRSs.
After Katharina, in the US the idea that the patient should have his own record, a PHR, which should be independent from the "pure" medical record, was given an enormous impulse. (for more see Paul Tang et al.) From that moment on I have been fighting this concept in many of my blogs, articles and speeches.

Now, in his blog, Kuraitis turns around the wheel completely. (see picture)
You can discuss whether it should be the way Kuraitis proposes or the way I have been promoting, where the PHR is an integral and equal part of the EHR, i.e. PHR + EMR = EHR.

But the fact that it took 3 years to come up with the concept that the new generation PHR should be an integrated record where I, and many others with me, have been saying this over and over again, makes me an impatient patient.

Tuesday, September 16, 2008

E.R. Patients Often Left Confused After Visits

E.R. Patients Often Left Confused After Visits
Published: September 16, 2008
From the article:

Many emergency room patients are discharged without understanding how to care for themselves once they get home, researchers say.

In the past, patients who did not follow discharge instructions were often labeled noncompliant. “Now, it’s being called health illiteracy,” Dr. Coleman said, adding that as many as half of all patients are considered to lack the ability to process and understand basic health information that they need to make decisions.

But the patient is only part of the equation, he continued; doctors are notoriously inept at communicating to patients.

The new study found that people were not aware of what they did not understand, suggesting that simply asking a patient if he understands is not enough.

“We’re good at saying, ‘Here’s the information, any questions?,’ ” Dr. Coleman said, “and the person nods his head, but they don’t get it.”

Marina: It all boils down to a lack of information...and ability to transfer information...

Monday, September 15, 2008

Afterthoughts of the CNN interview.

CNN gets between 25 to 35 Million visitors a month according to Compete Site Analytics. I asked Ms. Elizabeth Cohen about the impact she though her column had and she did not know.

To learn about her readership and impact I believe Ms. Cohen should aligning her column with the Web 2.0 momentum and perhaps consider:
  1. Opening a Facebook account so empowered patients can learn about her life and column at CNN.
  2. Opening a Twitter account to send updates on how the columns are evolving.
  3. Letting fans write a chapter of Elizabeth's new book on smart patients, following the example of Freakonomics.
  4. Developing an open, user friendly, web platform where the readership can:
  • See a list of topics currently in production.
  • Suggest new topics for the column.
  • Rate the topics according to preference and priority.
  • Delete topics not of interest to empowered patients.
  • Recommend sources of information, search engines, blogs.
  • Connect with other fellow empowered patients and create a community.
As for ideas for new columns I suggest (please note the journalistic style...):
  • 5 things you need to know if you are going to self-medicate.
  • Who should think about a 'living-will'?
  • Myths and misconceptions about organ donation.
  • How to talk about death with your loved ones?
  • Superbugs and the problem with antibiotics.
  • Why are we still talking about washing hands in the 21st century?
  • The obnoxious patient (part 2): when being "too-good" of an empowered patient may put you at risk.
  • Finding a Doctor 2.0.
  • 5 Mistakes to avoid while using Email or the Phone with your doctor.
  • Are Electronic Personal Health Records something you need?
  • How to benefit from like-patient social networks?
  • Finding reliable health information that matters to you: How to set up an RSS reader.
What do you think and what are your suggestions?

Carlos Rizo

Friday, September 12, 2008

The 'too-empowered' Im-Patient

The interview with Elizabeth Cohen, columnist and medical correspondent for CNN went well. Elizabeth wanted to explore the risks of being "too-good-of-a-good-patient' and when and how this could compromise care. Most of the conversation centered around my personal vignette on the British Medical Journal article entitled "I am a good patient, believe it or not" published with two of my mentors. Here is the vignette:
The health professional who catheterised me after my recent appendectomy used the anaesthetic gel simply as lubricant, without waiting for the anaesthetic to take effect. Neither I nor my wife, who is also a doctor, openly questioned the neglect of this simple precaution, which converted an unpleasant procedure into an unnecessarily painful one. Why did we let that happen? Did we think that being passive and compliant made me a good patient? Or were we just too afraid to question the authority of our caregiver?
Revisiting the experience over and over to get clarification on the questions was painful but not as painful as the experience itself. There are advantages and disadvantages of being too-empowered and only through our own journeys we'll be able to find the right level of empowerment for each situation. Good luck... it changes all the time.

Friday, September 5, 2008

Differing opinions about Telemedicine

Differing opinions about Telemedicine
Updated: Sep 2, 2008 07:23 PM EDT

Includes video...

Patients pay $99.95 to access MDWebLive. The fee includes a camera, headset, and the first online doctor's visit. After that, it's $40 up front per consultation. Some insurance companies reimburse for the service.

It is convenient, but it's also controversial.

Dr. Bernd Wollschlaeger, the president of the Dade County Medical Association, said patients must have a traditional face-to-face relationship with their doctors before using telemedicine.

"You see the physician first, establish patient-physician relationship, do a complete physical exam," Wollschlaeger said. "You can utilize the online consultation as an adjunct in your relationship, but not as a substitute for your relationship...."

At least the importance of a doctor-patient relationship is acknowledged!

Books on Doctors as Patients and a few on the Doctor-Patient Relationship