I gave a talk recently to a group of my peers about addressing the needs of patients after a diagnosis of cancer, emphasizing points where transitions occur — from treatment, to end of therapy, surveillance, recurrence, and extending all the way up to the end of life — and how important it is to consider the entire journey of a person …
Are physicians ready for the e-patient movement?
Do I value the privacy of my health information? What do you mean?
That if I email my doctor about an embarrassing symptom, only my doctor will read it?
That only my doctor, my nurse and I have access to the information in my electronic medical record, including notes on our confidential conversations, prescriptions and test results?
That my local drug store doesn’t sell information about me to pharmaceutical companies?
That …
Do patients value their health information privacy?
In fall of 1994, I was sixteen years old and sick. I had lost a lot of weight, reduced my diet to BRAT and roast chicken, filled a half-dozen stool samples, even tried a few prescriptions — and nothing seemed to help.
By that point I was seeing a gastroenterologist, Dr. C. After a pointless barium enema and follow-through, Dr. C performed a colonoscopy. From that, he gave me a definitive …
The best thing a doctor ever did to me
I came across a really good post on the Daily Beast written by a pediatrician in New England, griping (appropriately) about parents who were unwilling to trust his judgment about vaccinating their children.
Why have so many patients lost trust in their doctors?
You might challenge the assumption that patients used to trust their doctors more, and that would be a fair question. I haven’t …
Why patients have lost trust in their doctors
They say medicine is a hard science, based on heavily scrutinized theories and proven postulates. Medicine is supposedly made up of differentials, diagnostic workups, and medications aimed to alleviate or cure. Everything is based on evidence, everything. But, today, something happened that hasn’t been researched using IRBs; something intangible that restored my faith in humanity.
I was on my way home from a long day of being intensely questioned by residents …
Medicine can be done with words, actions, or a smile
Twitter — its functions, benefits, risks and limitations — has figured prominently in the heated discussion about Emma and Bill Keller’s respective editorials in The Guardian (since deleted, though the archived version is still available) and the New York Times about the Twitter feed of Lisa Bonchek Adams. I have followed Lisa for a long time and greatly admire her thoughtful, highly …
Why I tweet: A patient advocate view
Overheard in the gym:
“Yeah, but I heard that ____ can be dangerous.”
“Oh, they wouldn’t let us buy it if it was.”
Lately, the public’s faith in the safety of prescription and over-the-counter drugs has been making me uneasy. Advances in drug development mean that many of us truly can live better lives through their wise use. But are we adequately guided and protected by a) regulators, b) our clinicians, c) a …
Patients need to take an active role in their medications
One year ago, my book, When Doctors Don’t Listen: How to Avoid Misdiagnoses and Unnecessary Tests, was published. My goal in this last year has been to travel around the country and talk about the book and its message of advocating to improve your health. I planned a 48-city itinerary where I’d crisscross the U.S. from Massachusetts to California and back. I’d speak at bookstores, libraries, nursing homes, universities, and community …
Learning from patients on a speaking tour
Here are a few words some physicians and medical professionals have used to describe patients who have turned to Dr. Google for information and advice on their medical conditions: irritating, suspicious, distrustful and challenging.
Perhaps frustrated with physicians’ continued resistance to Internet-empowered patients, Dr. Kevin Pho urged them to “deal with” the fact that patients “Google their symptoms.”
But, we all know the Internet-informed patient is old news. I’m here with …
Beyond Dr. Google: How new technologies will affect patient-provider relationship
Many years ago, Alfred Korzybski wrote that “the map is not the territory.” Gregory Bateson went on to argue that the map, which represents reality, is not the reality. This distinction has implications for the role of patient voice in health care planning and policy.
Today, many organizations are making serious attempts to include the patient voice in policy and decision-making. Unfortunately, more than a …
Speaking on behalf of patients is not the same as speaking as a patient
What can we learn from an experiment conducted on a single person? That is, when the subject population (N) is a single person, aka N=1? How and how much do such findings contribute to knowledge about the experimental intervention? How relevant are results to other patients or populations or diseases? In assessing what is known about a phenomenon, how are these findings treated in comparison to studies with 30 or …
Is a single patient representative in a group sufficient?
This is the time many of us make resolutions about our lives — often tied to our health and wellness.
As the health care industry enters a new era of consumerism, people are seeking more and more ways to take ownership over their health and health care. While data about doctors, hospitals and health outcomes are becoming more available and transparent, we still have a long way to go.
Perhaps in a …
5 health care resolutions to make in 2014
There are certain situations in my life where I feel really stupid. One is when CNBC’s Squawk Box senior economics reporter Steve Liesman discusses the bond market. While I recognize the words he uses as English grammar, I find almost every word to be incomprehensible gibberish. Recently, he informed me that “given the Feds propensity towards quantitative easing in Q4 the 10 year yield could hit 3%.” I think that …
Researching health information online: Recognize your limitations
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Silence — it’s deafening. I look around at this empty apartment and take in the sinking feeling that I’m alone.
New Yorkers seem to crave “alone time.” I see individuals sitting on park benches all over the city, stealing moments, staring into space, encased in an invisible aura of solitude. It’s quite a feat actually to do this amidst the noise and tidal wave of humanity that ebbs and flows through …
Death has made me more resilient
You may have noticed an uptick in messages from your health plan or clinician notifying you that “You are the captain of your health care team.” I have seen them here and here and here and here, for example.
My response to this message? Bad metaphor: I am not the captain of my health care team.
I may — on some days — consider myself a member of that team, should I actually …
Why patients should not be captains of their health care teams
It happened out of the blue, as such experiences often do.
I had parked my car and was walking a short distance from the public parking deck on a covered concrete sidewalk, past the open expanse of lawn and twinkling Christmas lights in front of the hospital. I was going to visit a friend who had just had surgery, and it had been quite some time since I had been in …
The memories we have during the holidays
The first thing we need to do is analyze what’s broken.
Let’s approach this problem as if it were a patient in our office. It’s our job to deliver a diagnosis based on the patient’s problem.
That’s easy; we’re doctors, after all.
“So, what seems to be the problem today, Mrs. Smith? How can I help you?”
“Well, it seems that no matter how hard I try, I can’t make progress. I want to …
What is it about today’s medical care system that isn’t working?
I’ve been chronically ill since I contracted a viral infection in 2001. Were I to recover, I’d take these six hard-earned lessons with me into the land of the healthy.
1. Less is more. I used to be an accumulator. My life was filled with stuff: books and magazines that sat unread; CDs; jewelry; knickknacks and trinkets; clothing and all its accompaniments (shoes, belts, scarves). Since becoming sick, I’ve learned that less …
6 lessons the sick can teach the healthy
Current efforts of clinicians, hospitals and researchers to make health care more “patient-centered” include inviting some of us to advise on research priorities, care organization and delivery under the assumption that, as patients, we understand what patient-centered outcomes and care are. These invitations and our acceptance of them often result in confusion and disappointment for everyone, regardless of good intentions. What do patients know about the inner workings of …
Valuing patient and family input in health care
January of 2010 initiated me into the life of a chronic pain patient. For sixteen months I plunged into a diagnosis journey that brought with it ten misdiagnoses by eleven respected physicians, fifteen procedures and tests, twenty-two medications and crushing pelvic pain.
People have asked me if I am angry about it all; the misdiagnoses, prolonged pain, time spent, needless tests and sometimes painful procedures. Anger is not the presiding feeling, …
Doctors might not really have a grasp on the art of diagnosis
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