Patient empowerment is intended to help patients. Like any power, it can harm.
"Why Survival Rate is Not the Best Way to Judge Cancer Spending" by Aaron Carroll M.D. serves a purpose: It brings attention to how we measure and talk about success in healthcare.
My September 15th post in response to Penicllin Allergies Overblown introduced the problem of physicians over-prescribing broad-spectrum antibiotics when penicillin would be the more appropriate drug.
A front-page story in today's Science Times poses a provocative question in the rapidly changing world of medical diagnostics: Can computer software ever replace physicians to ensure timely, correct diagnoses?
In my last post, I introduced the Choosing Wisely™ campaign, an effort by clinicians to avoid overuse or inappropriate use of tests and therapies. Obviously, a successful campaign would save lots of money. But the campaign is motivated by a higher goal that reflects the mission of Healthy Survivorship.
Did you know that when you take a generic drug, you essentially forfeit the ability to sue the company making the drug for damages if you experience an adverse event?
Now let's look at the players who influenced the FDA's decision to revoke approval of Avastin for breast cancer. The complex process requires a book-length manuscript to fully explain. Rather than abandon my effort, here are the bare bones:
To judge the FDA's recent revocation of approval for Avastin for breast cancer, let's go back to basics. What is the job of the FDA?
Recently the FDA revoked approval of a best-selling drug, Avastin, for treatment of breast cancer. Ever since, arguments for and against the removal have been voiced in blogs and major media by a wide variety of people with different points of view. Let's look at some of the issues in the context of Healthy Survivorship.
My recent posts have discussed some of the difficulties of modern medical decision-making in the context of PSA testing for prostate cancer. A new book by Harvard oncologist Jerome Groopman and Harvard endocrinologist Pamela Hartzband offers help to Healthy Survivors: Your Medical Mind: How to Decide What is Right for You.
In my last post, Hope or Letting Go, I shared the story of a physician, Dr. Youn, still troubled by an incident that happened ten years ago. Since reading it, I've been bothered by some of the questions he posed.
For example, Dr. Youn asked if concern for the needs of the patient's loved ones ever take precedence over the patients' needs?
Patients are not Healthy Survivors if they believe the promises of charlatans. What about patients who receive treatment from of team of professionals at a major university in a clinical trial that turns out to be based on wrong information?
We are not born knowing how to become Healthy Survivors. We aren't taught in school how to get good care and live as fully as possible when living with, through and beyond cancer or other serious illness. I wish we were.
If a picture is worth a thousand words, this 17-minute video by Eric Slade Productions is worth at least an undecillion (1 followed by 36 zeros).
In 2006, leaders in the state of Washington created the Health Technology Assessment (HTA) program to evaluate the cost-effectiveness of various medical therapies. With our country facing a huge budget deficit, what could be better than determining which treatments are worth paying for?
My recent posts are about the trouble of defining "rare cancers." The attention these cancers are now getting gives Healthy Survivors many reasons for hope.
I chose internal medicine as a career because I love having "the big picture."
One of my great concerns about the changes in modern medicine is this: It is becoming increasingly common for none of the clinicians on a patient's healthcare team to have that big picture so vital to expert and compassionate care.
I shudder when I hear stories of physicians who order a CT scan to evaluate a patient's pain without examining the painful area. So I was happy to read that Dr. Abraham Verghese is on a mission to save the art of the physical exam.
On my recent post about clinical trials, commenter Steve Walker wrote, "The Phase III trial is being run primarily to satisfy the rigid, formulaic and in many cases scientifically obsolete requirements imposed by the FDA's Office of Oncology Drug Products for most cancer drugs...."
Is the randomized clinical/controlled trial (RCT) obsolete?
Recently, I've pointed out the clashes between business and ethical considerations and beween clinicians' obligations to their individual patients and to the method that leads to advances. What if researchers can find ways to satisfy both the science and today's patients?
In Phase I trials researchers test an experimental treatment in a few patients for the first time. The purpose is NOT to see if the treatment kills cancer cells, but only to:
What if the patients in a Phase I trial experience shrinkage of their tumors? Should this speed up FDA approval of the trial drug?
My last post introduced a dilemma regarding modern clinical trials: Is it ethical to randomize some patients to the "control arm" of a trial where they will NOT receive the trial drug?
According a NYTimes article, one particular trial of a therapy (called PLX4032) for malignant melanoma "ignited an anguished debate among oncologists about whether a controlled trial that measures a drug's impact on extending life is still the best method for evaluating hundreds of genetically targeted cancer drugs being developed."
People who hear my story often say, "You had an advantage getting into those clinical trials, because you were a doctor with connections." Given the paucity of patient-centered resources in 1993, this was true.
Today a plethora of excellent resources can help patients and families learn about clinical trials and find any available trials that might be right for you. Resources include:
As a scientist, I credit clinical trials with advancing our understanding of cancer and ability to treat it effectively. As a patient, I credit clinical trials with playing an essential role in my survival.
From both perspectives it troubles me greatly that only ~3% of adult cancer patients participate in clinical trials.
My recent posts set the stage for asking: Does the opportunity for patients to read their medical charts help or hurt patients' ability to become Healthy Survivors?
In my August 9th post, I introduced you to the OpenNotes project. If you are wondering why we need the study, here is a two-word answer: informational technology (IT).
Have you ever read what your physicians and nurses have written in your medical chart? If not, would you want to?
For the next few posts, we'll explore the OpenNotes project in the context of Healthy Survivorship.
Patients wanting to learn about their illness used to search high and low for a few drops of patient-centered information. The dilemma for modern patients has become how to sort through the flood of information available on the Internet.
HON certification can help.
Great progress has been made in linking disease to mutations in certain genes. So why the sudden brouhaha at the FDA about companies selling gene-testing kits directly to consumers?
In the newsletter of the Texas Chapter of the American College of Physicians, Dr. Steve Urban shares an important concern about Electronic Health Records (EHR).
What a three days I've had here at the 2010 Biennial Conference. While packing my suitcase for the return home, I'm thinking about all I've heard.
Posted at 09:19 AM in Action, Clinical Trials, Dictionary of Healthy Survivorship, Doctor-Patient Communication, End-of-Life, Family illness, Finances, Health care system, Healthy Survivorship, Hope, Knowledge, Post-treatment Recovery, Science, Uncertainty | Permalink | Comments (3) | TrackBack (0)
Tags: post-treatment survivorship
Tomorrow begins a conference entitled "Cancer Survivorship Research: Recovery and Beyond." And I have a job to do.
Your doctors evaluate your pain and conclude it is due to something benign (i.e., you don't have cancer, a broken bone or other health-threatening condition). Then they give you a prescription for a placebo. Should you sue these doctors? Or thank them?
The task sounds innocent enough: You copy your medical records on your personal home copier or an office copier, making sure nobody is looking over your shoulder and making sure to take all your originals and copies with you. Are you safe? Maybe not.
Will someone please explain this to me: Clinical trials are the modern tool for finding truths about preventing and treating cancer. Yet our system puts obstacles in the path of clinicians who might participate in designing and running trials and in the path of patients who might enroll in trials.
Patients obtain medical information not only from their healthcare team but also from the Internet. Time Magazine's Bonnie Rochman discusses one potential benefit of this phenomenon in a fascinating article entitled, "When Patients Share Medical Data Online."
What does it mean to "value" the time and expertise of primary care clinicians (PCPs)?