April 30th, 2011 by DavedeBronkart in True Stories
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Two years ago we wrote “Let’s hear it for the ‘d-patients’” — doctors who become e-patients themselves. We said “D-patients prove that patient empowerment is anything but anti-doctor. Heck, sometimes it’s a doctor preservation movement.”
A new article in our Journal of Participatory Medicine provides a compelling example: A Physician’s Experience as a Cancer of the Neck Patient: The Importance of Patient Participation. The author, Itzhak Brook MD, makes our point:
I am telling my personal story in the hope that health care providers will realize the difficult challenges faced by a patient diagnosed with cancer and undergoing extensive surgeries. I am also discussing the importance of active participation of the patient and their family members in all phases of care.
JoPM co-editor Charlie Smith adds, in his introductory note: (emphasis added)
You may wonder why a physician’s account of his illness and the frustrations he experienced merit publication in this journal. But, if a doctor has this degree of anxiety, this much difficulty getting information about his care and this degree of struggle making good decisions, then patients can easily understand why they feel so overwhelmed and incapable, at times, of truly “participating” in their own care. What we are advocating for is difficult in the best of circumstances and requires all hands on deck for the task! Read more »
*This blog post was originally published at e-Patients.net*
March 30th, 2011 by DavedeBronkart in Health Policy, News
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Last Thursday at the headquarters of the British Medical Journal in London, an important announcement will be made about patients’ rights to be actively involved in decisions about their treatment. Below is the press release about it.
The subject is shared decision making, which we’ve been posting about recently (series here; initial post here.) Developed by the participants in a Salzburg Global Seminar last December, the document is called the Salzburg Statement. The pivotal distinction here is the difference between informed consent, in which the physician assesses the options and selects one, and gets your consent to do it; and informed choice, in which clinicians tell you the options, with all the pros and cons, and let you choose, based on your preferences.
Click the image to download. (It’s an A4 PDF; to print, those using letter size paper should select “Page Scaling: Fit.”)
Here’s today’s press release: Read more »
*This blog post was originally published at e-Patients.net*
March 21st, 2011 by DavedeBronkart in Health Policy, Health Tips
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It is a capital mistake to theorize before one has data. Insensibly one begins to twist facts to suit theories, instead of theories to suit facts.
Sherlock Holmes, in Scandal in Bohemia
I’ve been reading Jack Wennberg’s new book Tracking Medicine, which is about his lifetime of work in understanding the reality of how medicine is practiced, as a route to helping us achieve the best care possible for each of us. My first post about this was three months ago, en route to a seminar on SDM (shared decision making); my first post after the seminar was shortly after. The whole subject has bent my thinking about healthcare so severely that it’s taken me this long to decide what to say next.
Key findings:
- Your doctors, with the best of intentions and the best of training, may unwittingly be prescribing treatments that aren’t necessary for you, or not prescribing things that are. (“You” includes anyone you’re caring for.)
- This realization was developed not through people’s opinions but by looking at cold hard numbers. After controlling for all variables, the odds of a given patient getting a given treatment vary by hundreds of percent from region to region. Read more »
*This blog post was originally published at e-Patients.net*
March 11th, 2011 by DavedeBronkart in Research, True Stories
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[Recently] NPR’s popular program “Talk of the Nation” covered something we discuss often: How e-patients find information and find each other online. Featured guests were Pat Furlong, mother of two boys with a rare disease who started an online community, and Susannah Fox of the Pew Internet and American Life Project, a frequent contributor here. The audio is here.
It’s a good combination: Pat speaks from the heart about her own experience and her passion for community, and Susannah, as usual, speaks as an “internet geologist” — as she once put it, “A geologist doesn’t have opinions about the rocks, she just observes and describes them.” Susannah spoke about her newly-released report “Peer-To-Peer Healthcare,” about which she recently wrote here.
Listener comments begin around 13:00. Examples:
— A woman describes how she started a Facebook group for her painful chronic condition (ankylosing spondylitis) and it’s grown into a website, HurtingButHelpful.org. (Spoonies, take note!) What drove her to create a patient community? “There’s no one else who can understand what I’m talking about.”
— The mother of a newborn with a heart defect found similar parents online. Hearing their stories — and even seeing an upsetting photo — helped her prepare for the surgery.
— On the downside, the daughter of an ovarian cancer patient said her now-cured mom keeps going online to patient communities and getting scared by what she reads. (Host Neal Conan’s observation: “There other parts of the computer that can be addictive, and I guess this one can, too.”)
It’s heartening to hear coverage of online patient communities, including the risks and challenges, in a respected outlet like NPR. (Time covered it, too, a year ago.) And there’s no equal for the reality check of Pew’s data. Some patient activists suggest (and some people fear) that the Internet “frees” patients from doctors, but Pew says that’s not what people are doing. Read more »
*This blog post was originally published at e-Patients.net*
March 1st, 2011 by DavedeBronkart in Health Policy, Opinion
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ABCNews.com has posted a great new piece by Dr. Roni Zeiger entitled, “The Biggest Wasted Resource in Health Care? You.” Subtitle: “How Your Internet Research Can Help Your Relationship With Your Doctor.” It’s well reasoned and clearly written, and continues the trend we cited a month ago, when Time posted Dr. Zack Meisel’s article saying that patients who Google can help doctors.
Related notes:
— Dr. Zeiger’s article title parallels what Dr. Charles Safran told the House Ways & Means Subcommittee on Health in 2004: Patients are “the most under-utilitized resource.” He was talking about health IT, quoting his colleague Dr. Warner Slack, who had said it many years earlier. I often quote it in my speeches for the Society for Participatory Medicine, asserting that it applies not just to IT but to all of healthcare.
— Dr. Zeiger is on the editorial board of our Journal of Participatory Medicine and is Chief Health Strategist at Google. He gets the power of patient engagement deeply and clearly. Last fall he posted a prediction that in the future it might be malpractice for doctors not to prescribe a patient community to help you help yourself with your conditions.
Prediction: Googling and patient networks will become essential as we move toward the practice of shared medical decision making (SMDM). I know firsthand that the information my kidney cancer community gave me about coping with treatments went well beyond what my excellent clinicians could offer. (We’re starting a series on SMDM. The first entry was in December.)
*This blog post was originally published at e-Patients.net*
Two years ago we wrote “Let’s hear it for the ‘d-patients’” — doctors who become e-patients themselves. We said “D-patients prove that patient empowerment is anything but anti-doctor. Heck, sometimes it’s a doctor preservation movement.”
