Tuesday, December 23, 2008

Do Patients Trust Doctors Too Much?

Doctor and Patient: Do patients trust doctors too much?

By PAULINE W. CHEN, M.D., Published: December 18, 2008, NYT
When a doctor friend of recently heard a radio ad for a Web site where patients could rate their doctors, he almost drove off the road. “I can’t believe they’ve added doctors to the list,” he said of the site, Angie’s List, perhaps best known for its user-generated report cards on local contractors. “Why do patients want to assess my relationship with them in the same way they evaluate a roofing job?” he asked, shaking his head over what he interpreted to be more evidence of the disintegrating doctor-patient relationship...

M: Should patients spend more time researching their doctors?

Tuesday, December 2, 2008

Arrogant, Abusive and Disruptive -- and a Doctor

This is the title of a New York Times article published today. "Experts say the leading offenders are specialists in high-pressure fields like neurosurgery, orthopedics and cardiology." Does this sound familiar to you? It certainly brings back lots of memories, problems and many solutions. After being discharged as a patient I wanted to help my doctor to avoid similar incidents with his future patients. I offered unconditional help by revisiting my perspective in hope of finding reflection and a plan. He politely declined. I insisted on the condition that he should initiate contact with me if he wanted help. Two years later I have not heard from him. Am I a fool? Maybe. The door is still open.

Thursday, October 30, 2008

Unfortunately I have not been able to attend the Healt2.0 Conference in San Francisco. However I was able to get a good grasp of it. I published a lot of the output on the ICMCC Newspage and you can still read most of the reactions on Twitter: here and here.

During my observations there were 3 stages of surprise.

The first one was when I looked at wrap ups about the conference:

"With the explosion of healthcare information technology companies providing tools and resources for consumers, finding a business model to enable Health 2.0 to flourish is the market's next big question, said the moderator of a Health 2.0 Conference panel this week."
(Patty Enrado, Health 2.0 Conference: The business case is real, HealthCare IT News)
"This market and the players within need scale. Virtually all of them are small operations with less than 25 employees. Most that I spoke to are still very much in start-up mode, fleshing out the product and only now begining to think about how they will take the product to market and scale. Channel strategies are immature, messaging non-existent. A lot of promise shown with regards to technology, despite all the overlap, but we are far from seeing this market truly succeed as technology is only a small piece of what it takes to make a business successful."
(John Moore, Health 2.0 Wrap-up, Chilmark Research)

From the outside it really looked as if companies were the central focus.

The next surprise was this sentence in another wrap up:

"This post will share just a few of the many highlights from the event which we found particularly relevant to HIV/AIDS service providers."
(Highlights from Health 2.0: User-Generated Healthcare 2008, AIDS.Gov. blog)

Apparently, the community that more or less gave birth to the concept of the "expert patient" commented about the conference solely from a provider's point of view.

And then I remembered my reaction to one of the tweets from the conference:

"People want privacy, and they want convenience."
(twitter quote)

That reaction was, "sais who?". It sounds like His Master's Voice.

I haven't been there, I only saw comments and wrap ups. However, I was missing something. At the outside I did not hear the patient's voice. It seemed to be about the patient, not with the patient.

Apparently I have not been the only one:

"Others complained to me that there were no patients. A fair criticism, although our spring fling in March included 4 actual patients sharing their experiences throughout the day, and most of the speakers and demoers relayed great stories or information about their users. And of course Edelman was able to show its new data about patients an their engagement. Still others wanted more about physicians or more about policy."
(Matthew Holt, Some more reflections on Health 2.0, The Health Care Blog)

I rest my case....

Health 2.0 is about participatory health which means:

"the combination of health data and health information with (patient) experience through the use of ICT, enabling the citizen to become an active and responsible partner in his own health and care pathway."
(Lodewijk Bos, Health 2.0: Definition, ICMCC Blog)

As the song goes, it takes two to tango, although it seems that Clay Shirky has a different opinion. He has been quoted as saying:

"Patients in aggregate behave very differently than when solo" and "That ability, for patients to pool their resources, is a massive change to the health industry"
(Lidija Davis, Health 2.0 and The New Economics of Aggregation, ReadWriteWeb)

This deserves a separate entry, once the full text (or recording) of his speech is published.

One of the participants wrote to me in a private mail:

"The voice of the patient was amazingly absent. And there were precious few of us talking about delivering services because patients want them."

Which confirms the key question Carlos Rizo asked in one of his tweets:

"Unsure how much patients are involved in the design of all these Health 2.0 systems"
(twitter quote)

So, where was the patient's voice?

Lodewijk Bos
(also published on the ICMCC Blog)

Tuesday, October 28, 2008

Stories in the Service of Making a Better Doctor

Doctor and Patient: Stories in the Service of Making a Better Doctor
Published: October 24, 2008, NYT
Narrative medicine employs short stories, poems and essays to build empathy in young doctors.

"...As part of the Accreditation Council for Graduate Medical Education’s Education Innovations Project, Dr. Panush and his faculty colleagues bring poetry, short stories and essays to rounds each day and discuss them in the context of the patients they see. These daily discussions, supplemented by offsite weekly conferences, form the core of the residents’ narrative medicine experience.
One year into the program, Dr. Panush and his colleagues looked at the effect of these daily discussions on the residents and their patients. What they found were significant improvements in patient evaluations of residents and patients’ health and quality of life, from hospital admission to discharge."

Marina: perhaps literature has a greater purpose, after all!

Tuesday, October 14, 2008

The Choices Patients Make

The Choices Patients Make

Published: October 9, 2008

"There are certain choices patients make that I have never understood, choices that from my perspective as a doctor seem to undermine their very chances for survival. Or at least undermine the efforts doctors, nurses and even complete strangers make on their behalf.


There is a taboo in our culture against a sick person, post-transplant or otherwise, being honest about how difficult it is to live with serious illness and to live on the verge of death,” Ms. Silverstein said. “These folks admit to feeling grateful and sad, joyous and angry, optimistic and defeated, all at the same time; yet only half of their emotions are acceptable in the public eye.”

I asked Ms. Silverstein about how she had dealt with such pressure.

“There is no question that I am eternally and profoundly grateful for life and for my good fortune in receiving a donor heart just in the nick of time,” she responded. “But my heart transplant life is a mixed bag, a miracle with a flip side: a wonderful, awful, amazing, terrible existence.”

Then she added, “I have not lived a well day since my surgery — not one — and this is a difficult truth to bear. And sometimes, on the very rare occasion, it wears me down to the point of wondering if the illness and struggle are worth it.”

Marina: Is it that health care practitioners don't want to know about the 'dark' side of treatment? The after effects? The constant pain? The struggle? Do they perceive that they've 'taken care of the problem', so move on?

Your thoughts?

Monday, October 13, 2008

Discussion: When physicians are ready to promote patient empowerment / engagement, what do we want them to do?

On October 8, Ted Eytan posted an antry on his blog, called: “When physicians are ready to promote patient empowerment / engagement, what do we want them to do?“.

In his writing he said, that “the majority of my writing here points to the idea that physicians are very interested in empowering patients, because they want to perform well for them.”

I couldn’t resist to write a reaction: “Although I’m convinced that was not your intention, this sounds very patronizing. I think it asks for a definition of patient empowerment. Please read my article on “Patient 2.0 Empowerment“.”

Ted then reacted with the question how I would phrase it. This was my answer: “Would you have written: “because they want to perform well for them in active cooperation with them” or something in that sense, it would have been much more towards what I think patient empowerment is all about.”

And since that moment a very interesting discussion started. The most exciting, in my view, outcome is that there will be a Society and Journal of Participatory Medicine.

Have a look at the complete discussion, it is definitely worth reading!

Lodewijk Bos

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 www.icmcc.org. 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!

Tuesday, August 19, 2008

Questions cancer patients should ask

Questions Patients Should Ask
By JANE E. BRODY, Published: August 19, 2008

Patients armed with clear-cut facts are often able to make wiser choices about their care. Yet doctors are often reluctant to broach these matters.

In their review in The Journal of the American Medical Association of the role of chemotherapy at the end of life, Dr. Thomas J. Smith and Dr. Sarah Elizabeth Harrington listed these questions to ask — of professionals and of yourself — when considering chemotherapy that is unlikely to cure the cancer but may extend the length and quality of life.

Tuesday, August 12, 2008

Six Ways to Be a Better Patient

Six Ways to Be a Better Patient By Tara Parker-Pope, Published: August 12, 2008, NYT

To improve doctor-patient communication, patients need to follow a few rules of their own.

Last week, the Well blog featured “Six Rules Doctors Need to Know.” So what about patients?
Dr. Robert Lamberts, the August, Ga., physician who wrote the original rules in his blog, Musings of a Distractible Mind, says it was easy to criticize his own profession, but it’s tough to turn the spotlight on patients. That said, patients are half of the doctor-patient relationship, and they need a few rules of their own. Here are his six rules for patients.

...Any comment...

Tuesday, July 29, 2008

Doctor and Patient, Now at Odds

Doctor and Patient, Now at Odds.
Published: July 29, 2008
"A growing chorus of discontent suggests that the once-revered doctor-patient relationship is on the rocks.
The relationship is the cornerstone of the medical system — nobody can be helped if doctors and patients aren’t getting along. But increasingly, research and anecdotal reports suggest that many patients don’t trust doctors.

About one in four patients feel that their physicians sometimes expose them to unnecessary risk, according to data from a Johns Hopkins study published this year in the journal Medicine. And two recent studies show that whether patients trust a doctor strongly influences whether they take their medication."

Is the trust gone? Comments?

Wednesday, June 25, 2008

Hurried Doctor Visits May Leave Patients Feeling Forgetful

ScienceDaily (June 25, 2008) — Have you ever been whisked through a doctor's visit, and afterward were unable to remember what the doctor said? A University of Rochester Medical Center study disclosed that doctors don't often take the steps necessary to help patients recall medical instructions.

The study, published online in this month's Journal of General Internal Medicine, investigated how frequently physicians repeat themselves, write down information, summarize instructions or take other steps to help patients remember the doctor's advice. The results suggest that doctors do not use these tools effectively or consistently. In fact, not one of the 49 doctors who took part in the study summarized their treatment recommendations.

"It's common for patients to forget half of what they're told in a medical visit," said the study's lead author, Jordan Silberman, a second-year University of Rochester medical student. "Obviously, this is cause for concern. As noted by the British researcher Philip Ley, 'if the patient cannot remember what he is supposed to do, he is extremely unlikely to do it.' No matter how effective a treatment is, it can be rendered useless by poor recall."

Researchers sent unannounced standardized patients (actors trained for this study) into primary care physician practices across Rochester, N.Y., with hidden recording devices. The actors complained of typical heartburn symptoms. Researchers then coded the recordings to determine how often doctors reinforced their instructions in some way.

Only about a third of the physicians wrote down instructions for patients. About half of the physicians repeated their recommendations, but some only repeated about 10 percent of the information.

Very few of the doctors made sure the patient understood by asking him or her to repeat it back to the doctor -- a technique cited in research literature as one of the best ways to help patients recall medical advice. For example, Silberman said, the doctor might say, "We've talked about a lot of things today and I want to make sure you understand everything. Can you explain to me what you're going to do when you get home?"

Lack of time may be the biggest obstacle for doctors, researchers believe. The next step is to develop a new approach to improve patient recall that can be applied in today's busy practices, and then to study the techniques in the context of what is feasible for doctors.

The Agency for Healthcare Research and Quality funded the study, which was conducted at the Rochester Center to Improve Communication in Health Care, part of the URMC Department of Family Medicine. Co-authors include: Aleksey Tentler, a recent URMC graduate, Rajeev Ramgopal, a research coordinator at the VA Pittsburgh Healthcare System, and Ronald Epstein, M.D., URMC professor of Family Medicine and Psychiatry.

Thursday, May 8, 2008

Wolters Kluwer Health and Johns Hopkins Bloomberg School of Public Health Launch "The Patient"

Wolters Kluwer Health and Johns Hopkins Bloomberg School of Public Health Launch "The Patient"

"First Journal Dedicated to Using Scientific Methods for Patient-Centric Research
Baltimore, MD (May 6, 2008) – The Johns Hopkins Bloomberg School of Public Health and Wolters Kluwer Health, a division of Wolters Kluwer, today published the premiere issue of The Patient: Patient-Centered Outcomes Research, an international forum devoted to publishing research on patient-centered medicine.
The first academic journal in medicine to present solely the patient's perspective, The Patient addresses the growing concern that modern medicine has failed to adequately satisfy the needs of its most important stakeholder, the patient. In an era of managed care and cost-containment, current trends in medicine are being driven primarily by the needs and wants of healthcare payors. Even in academic medicine, new therapies are often studied in terms of their risks and benefits, measures that are chosen by physicians and researchers, often without the involvement of patients. The new journal will publish research to help advance a medical environment where patients are not just subjects but part of the scientific process."

Monday, April 28, 2008

Complicated medical lingo can confuse patients: researchers

Complicated medical lingo can confuse patients: researchers
Last Updated: Thursday, April 24, 2008 | 4:59 PM ET CBC News

"Using complicated medical jargon can be confusing, anxiety inducing and potentially dangerous for patients, a new study found.

The research, the focus of this week's editorial in the Lancet, finds that when doctors speak to their patients using the terminology they learned in medical school, patients can fail to identify what it is that's being said, be confused about their diagnosis or incorrectly interpret their condition.

According to health experts, the confusion can happen very easily."

Saturday, April 12, 2008

How to deal with the digitally empowered patient

How to deal with the digitally empowered patient

From the site:

April 2008

In November I wrote an article for the Time magazine Web site about an encounter with a demanding and computer-search savvy patient named Susan that touched off a small firestorm in the blogosphere. At least 20 well-read blog sites ran pieces about it with vigorous reader-response on both sides, either pro-patient or pro-doctor. The New York Times blog site alone has more than 300 write-ins, many emotional. At the end of January, CNN still had an article concerning this on the front page of its Web site.

For this Orthopedics Today Round Table discussion, I have gathered together a panel of orthopedic surgeons to discuss how patient empowerment by the Internet as well as other factors such as new commercialization efforts, regulation and the liability threat in medicine is changing their current practice and what they see as their future.

Scott V. Haig, MD

Saturday, April 5, 2008

Radio: White Coat, Black Art

White Coat, Black Art Radio series from the CBC
From the site:
"Dr. Brian Goldman takes listeners through the swinging doors of hospitals and doctors' offices, behind the curtain where the gurney lies.

It's a biting, original and provocative show that will demystify the world of medicine.

We'll explore the tension between hope and reality: between what patients want, and what doctors can deliver. Doctors, nurses and other healthcare professionals will explain how the system works, and why, with a refreshing and unprecedented level of honesty."

Wednesday, April 2, 2008

CMA unveils website for patient-doctor communication

CMA unveils website for patient-doctor communication
From the CBC:
A secure website for patients to interact with their family doctors was launched Tusday by the Canadian Medical Association.

CMA president Dr. Brian Day said the Mydoctor.ca portal will empower patients to take a more active role in their health care.

"The patient will be in control. I believe in empowering patients. I believe in a patient-focused system where the patient and the consumer is No. 1," Day said.

The new online tool, unveiled Tuesday at a news conference in Vancouver, focuses on tracking tools for three key areas: asthma, high blood pressure and obesity.

Patients using the system can call up their personal profile online and enter information about their conditions. That information is forwarded to their doctors' offices and then the physician monitors and assesses it.

More conditions, such as diabetes, will be added as time goes on.

Tuesday, March 25, 2008

When the Disease Eludes a Diagnosis

NYT Published: March 25, 2008
Why do doctors and patients often approach the diagnosis of disease so differently?

"...Part of the answer lies in the concept of triage — the notion, originated in wartime, of caring for the sickest and most salvageable patients first. Once they were saved, attention could be turned to less drastic cases.

A similar strategy has evolved in emergency rooms, where physicians are trained to “rule in” or “rule out” severe conditions. Thus, doctors immediately consider heart attacks or pulmonary embolisms for patients with chest pain, and intestinal rupture for those with abdominal pain.

But what happens when these conditions are ruled out? In such cases, doctors proceed to search for less dire (and, it must be said, more mundane) diagnoses. The trouble is that at this stage, some physicians, busy with other patients and duties, lose interest."

Saturday, March 22, 2008

Mansbridge with Richard Smith, former editor, BMJ

Former editor, British Medical Journal
One-on-one with Peter Mansbridge (video, 30 minutes)
Saturday, March 22, 2008
"...It seems every week there's a new medical study in the headlines, followed weeks later by other studies that seem to contradict the first findings.

What are we supposed to believe? And are journalists being vigilant enough in what they choose to report?

It's a delicate question but this week's guest has some tough answers to consider."

Practicing Patients

Practicing Patients
Published: March 23, 2008
PatientsLikeMe, an Internet start-up, creates information-rich communities for the chronically ill. Is it the next step forward in medical science — or just a MySpace for the afflicted?

"...There are a little more than 7,000 Todd Smalls at PatientsLikeMe, congregating around diseases like Parkinson’s, multiple sclerosis (M.S.) and AIDS, all of them contributing their experiences and tweaking their treatments. At first glance, the Web site looks like just any other online community, a kind of MySpace for the afflicted. Members have user names, post pictures of themselves and post updates and encouragements. As such, it’s related to the chat rooms and online communities that have inhabited the Internet for more than a decade.

But PatientsLikeMe seeks to go a mile deeper than health-information sites like WebMD or online support groups like Daily Strength. The members of PatientsLikeMe don’t just share their experiences anecdotally; they quantify them, breaking down their symptoms and treatments into hard data. They note what hurts, where and for how long. They list their drugs and dosages and score how well they alleviate their symptoms. All this gets compiled over time, aggregated and crunched into tidy bar graphs and progress curves by the software behind the site. And it’s all open for comparison and analysis. By telling so much, the members of PatientsLikeMe are creating a rich database of disease treatment and patient experience..."

Friday, March 21, 2008

The difficult doctor?

The difficult doctor? Characteristics of physicians who report frustration with patients: an analysis of survey data

BMC Health Services Research 2006, 6:128

Literature on difficult doctor-patient relationships has focused on the "difficult patient." Our objective was to determine physician and practice characteristics associated with greater physician-reported frustration with patients.

We conducted a secondary analysis of the Physicians Worklife Survey, which surveyed a random national sample of physicians. Participants were 1391 family medicine, general internal medicine, and medicine subspecialty physicians. The survey assessed physician and practice characteristics, including stress, depression and anxiety symptoms, practice setting, work hours, case-mix, and control over administrative and clinical practice. Physicians estimated the percentage of their patients who were "generally frustrating to deal with." We categorized physicians by quartile of reported frustrating patients and compared characteristics of physicians in the top quartile to those in the other three quartiles. We used logistic regression to model physician characteristics associated with greater frustration.

Tuesday, March 18, 2008

'Bothering’ Your Doctor

'Bothering’ Your Doctor
NYT March 17, 2008, 2:23 pm
By Tara Parker-Pope

Does the medical system try to prevent you from “bothering” your doctor?
That’s a question Sacramento physician Dr. Faith Fitzgerald mulled recently as she attempted to notify another physician about a health crisis involving one of his patients. She chronicles her futile effort to phone a fellow doctor in an essay that appeared in last months’ Annals of Internal Medicine.

Monday, March 17, 2008

Experts call for national pathology standards to protect patients

Experts call for national pathology standards to protect patients
March 17, 2008 5:15 pm
"...A looming judicial inquiry into how over 300 Newfoundland breast cancer patients received erroneous pathology results — and subsequent inappropriate medical treatment — is spawning calls for the development of national standards that would protect patients from such mistakes.
The medical errors made by Eastern Health authority were discovered in 2005 and led to the restesting of the results of thousands of patients.
Dr. Avri Ostry, a pathologist with Queen Elizabeth II Health Sciences Centre in Halifax, told CBC News Monday that pathologists are facing numerous challenges. These include a rapidly expanding workload along with ever-developing technology that requires constant retraining.
"I believe it is indicative of an issue that is certainly national — and that has to do with quality assurance and quality control across the spectrum in laboratory medicine," he said."
Is this terrifying or what?

How to be a good patient

How to be a good patient
From Dr. Rob

"...This handout was posted in our exam rooms.

We want you to get the best care possible in this office and hope to care for you for many years to come. If there is anything we can do to give you better care, please let us know. Yet there are some expectations we have for our patients. We ask that you read the list below and do your best to abide by these suggestions..."

Friday, March 14, 2008

Is cybermedicine turning us into a nation of expert patients?

Is cybermedicine turning us into a nation of expert patients? University of Glasgow
Issued: Tue, 11 Mar 2008 11:01:00 GMT
"Researchers from Manchester Business School and The University of Glasgow are undertaking an in-depth study into the impact of cybermedicine, such as virtual health communities and self-help sites, on face-to-face healthcare.
Funded by the NHS National Institute of Health Research Service Delivery and Organisation Programme, the research responds to the rise of the “expert patient” – who uses cybermedicine to self-diagnose – and the decline in the deference traditionally linked to professional judgement."

Friday, March 7, 2008

Wednesday, March 5, 2008

How to Handle a Medical Crisis

How to Handle a Medical Crisis

Time, Wednesday, Jul. 11, 2007 By Alice Park

One medical crisis is certainly enough to turn your world upside down. But imagine living through four of them. That's what Jessie Gruman did, with admirable resilience and laughter.

The 53-year-old social psychologist has turned her history into a practical and accessible guidebook, AfterShock, for people who are going through the same things she did — confusion, fear, and emotional seesaws — every time a doctor gave her devastating news about her health. Founder and director of the Center for the Advancement of Health, a non-partisan institute that helps patients get reliable information about their medical care, Gruman talks to TIME about her experiences and provides advice about how to weather medical storms...

Gruman's Common Sense Help for Getting Through the First 48 Hours

1. This is a crisis. Treat it as one.
Don't try to go on as though nothing is happening to you. Don't go to work for at least 48 hours, and cancel you social engagements until you get your feet back under you.

2. Protect Yourself
Talk if you want to talk, cry if you feel like it. There is no particular benefit or harm in either. Stop searching for information online if it is confusing or frightening. You will have time to learn more later.

3. Don't rush to resolve your treatment plan
The only task you must accomplish during the first 48 hours is to make sure you have set up the next doctor's appointment.

4. Eat
Even if you aren't hungry: you don't need a hunger headache. Drink, too. Water, for sure. Coffee or tea? Whatever you are used to. A little Scotch? Sure (but not the whole bottle).

5. Rest
Emotional stress is exhausting. If you can nap, do it. If you are agitated, get up and walk around the block. If nothing else, it'll remind you that the world is carrying on in spite of your news.

6. Breathe

7. Move around

8. Remember: You will not always feel like this.

From AfterShock, by Jessie Gruman, PhD, Walker & Co., 2007.

Saturday, March 1, 2008

Is There Hardening of the Heart During Medical School?

Is There Hardening of the Heart During Medical School?

Physician-Patient Relationship

Academic Medicine. 83(3):244-249, March 2008.
Newton, Bruce W. PhD; Barber, Laurie MD; Clardy, James MD; Cleveland, Elton MD; O'Sullivan, Patricia EdD

Purpose: To determine whether vicarious empathy (i.e., to have a visceral empathic response, versus role-playing empathy) decreases, and whether students choosing specialties with greater patient contact maintain vicarious empathy better than do students choosing specialties with less patient contact.

Patient Fired by Doctor

"Ms. Matthews' case illustrates the difficulty many people with mental illness have functioning in society. But it also highlights the grey area in doctor-patient relationships that can emerge when a patient is seen to refuse treatment, be unco-operative or display other behaviour that causes friction.

The Canadian Medical Association has guidelines governing the relationship between doctors and patients and says that patients should have the chance to find a new family doctor before a physician terminates treatment.

However, doctors in Canada have the right to stop seeing patients at their discretion, particularly if a patient is difficult or won't accept treatment, said Jeff Blackmer, executive director in the CMA's office of ethics."

Sunday, February 24, 2008

Patient Is a Virtue

Diagnosis: Patient Is a Virtue
Published: February 24, 2008
When faced with a tricky set of symptoms, making a determination — and doing it quickly — saves a life.

(How lucky for the patient that he was also a doctor!)

"...He explained his thinking to the patient, who listened, nodding. As he moved toward the door, the doctor-patient couldn’t resist adding one more possibility to the list: “Could I have dissected my aorta?” he asked. The aorta is the thick, muscular blood vessel that delivers oxygenated blood from the heart to the rest of the body. Sometimes the inner lining of the artery can get torn — often from a spike in blood pressure. When that happens, blood pours into the tear, creating a separate channel between the inner layers of the vessel and the outer muscular wall. This new channel can compress the arteries leading off the aorta, starving the tissues they normally feed."

Tuesday, February 19, 2008

Have You Ever Been in Psychotherapy, Doctor?

Published: February 19, 2008
A curious thing happened to one of my psychiatric residents not long ago. One of his patients caught him off guard with a challenging question: “Have you ever been in psychotherapy yourself?”
"...Psychiatrists who have had the humbling experience of therapy themselves know something of what it feels like to be a patient — the sense of frustration, anxiety and dependence it entails.
As such, they can better understand the emotional reactions patients have to their illness — and to their doctors.
I don’t know about you, but that sounds like the kind of psychiatrist I would want taking care of me."

When Doctors Become Patients

A new book talks about what happens when doctors navigate the medical system as patients.
Published: February 8, 2008
From the article:
"When doctors get sick, they discover fissures in the health system that they didn’t know existed. They learn that seemingly small annoyances they never paid attention to as doctors — like long waiting times or a broken television in a hospital room — really are a big deal when you are the patient. Even doctors who thought of themselves as compassionate recognize they can do better once they experience life as a patient."

Monday, February 18, 2008

Patient Portals: Not the Open Floodgates Physicians Fear

Studies suggest messaging raises patient satisfaction without any corresponding increase in workload.
America College of Surgeons Surgery News 02/08
See page 2.

Miracle Workers? Why we expect doctors to do the impossible

"Even today, in our high-tech, accountability-obsessed and, supposedly at least, patient-empowered times, the oldest of all relations between patient and physician — that of supplicant to shaman — continues to exert its authority. This may not seem sensible if the only valid criterion for judging the doctor-patient relationship is the use that is made of scientific data and clinical findings. But good doctors want to treat their patients, not just their patients’ diseases, and certainly most patients want to be treated as human beings, not cases. Viewed from that perspective, the elevated expectations patients bring to the consulting room may be for the best."
From the New York Times Magazine, 17.2.2008

Includes elements of the doctor-patient relationship

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