[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*
In cancer treatment, detection of a tumor in an early stage markedly increases the chance of favorable outcomes.
Can the much-aligned blood thinner, warfarin, occasionally help in early detection of cancer?
Few pharmacologic agents receive more bad press than warfarin. Stories, which are too numerous to count, like “Did warfarin kill my father,” can be widely found on Internet forums, search engines, and are often quoted by reluctant patients — whose numerator of bad warfarin experiences is one.
It is true that warfarin has a narrow therapeutic window — a small difference between an effective dose and dangerous dose. Read more »
*This blog post was originally published at Dr John M*
Should you friend your doctor on Facebook? It’s a question that’s gaining increasing relevance as Facebook increases its social networking dominance. I’ve touched upon the issue in the past. So has the New England Journal of Medicine.
Washington, DC, physician Katherine Chretian gives her take on the issue in a recent USA Today op-ed. She is an expert of the Facebook-medicine intersection, having authored a JAMA study on the issue.
She says, no, doctors should not be friending their patients:
Having a so-called dual relationship with a patient — that is, a financial, social or professional relationship in addition to the therapeutic relationship — can lead to serious ethical issues and potentially impair professional judgment. We need professional boundaries to do our job well.
Furthermore, there’s the little matter of patient privacy and HIPAA. I wasn’t aware of this, but simply becoming Facebook friends with patients can infringe upon uncertain ground. Read more »
*This blog post was originally published at KevinMD.com*
A couple of health journalism gems you shouldn’t miss just because they were published over the holiday weekend:
Natasha Singer of the New York Times had an important piece, “When Patients Meet Online, Are There Side Effects?,” about privacy concerns when social networking sites like CureTogether.com and PatientsLikeMe.com offer online communities for patients and collect members’ health data for research purposes.
John Fauber of the Milwaukee Journal-Sentinel published another in his “Side Effects” series on conflicts of interest in healthcare. This one was about doctors vouching for the drug Multaq for treating atrial fibrillation without ever having seen all of the data.
The Minneapolis Star Tribune began a “Too Much Medicine” series. Health editor Dave Hage informs that they’ve been working on this project for nearly a year with plans for a few more installments in coming months, each covering different ailments and procedures that are over-used or under-proven. (Unfortunately, I think the series is only available in the print editions.)
*This blog post was originally published at Gary Schwitzer's HealthNewsReview Blog*
As the newly-appointed director of content for Better Health and personal editorial advisor to the infamous Dr. Val, I’ve been given the honor of hosting this edition of Grand Rounds — a weekly summary of the best health blog posts on the Internet.
This week’s submissions cover a nice mix of issues important to health and medicine, which I’m presenting in super-organized, far-from-creative alphabetical order. (Excuse my conservativeness as I’m originally a product of the Mayo Clinic, and even after jumping ship nearly five years ago, I’m still affected due to my unchanged physical location — I’ll find my more liberal social-media sea legs soon, promise!)
From geriatrics to Viagra, PET scans to personality disorders, dentists to American Idol, you’ll find it in this ever-so-tidy session of Grand Rounds.
Best of health,
GRAND ROUNDS: EDITION 6.34
A Healthy Piece Of Mind puts cancer in the context of the Serenity Prayer: The Audacity Of Trope: Cancer Stories.
ACP Hospitalist reports that the FDA has launched a campaign to help healthcare providers report misleading drug advertising and promotion: Join The Ad Police!
ACP Internist writes that telemedicine is changing the playing field in primary care as internists sign up to diagnose patients over the Internet: Doctors Delivering Diagnoses Online.
Behaviorism And Mental Health shares the idea that it’s wrong to consider certain lifestyles and mindsets as pathological: Personality Disorders Are Not Illnesses.
Colorado Health Insurance Insider blogs about how hospitals that don’t treat Medicaid patients will end up losing money under the new healthcare reform law: Colorado Expanding Access To Medicaid And CHP+.
Diabetes Mine writes about American Idol contestant Crystal Bowersox and how the media has reacted to her having diabetes: Doin’ Her Thing With The ‘Betes.
EverythingHealth offers tips on how to keep kids safe when communicating with others on the Internet: Keeping Kids Safe On Social Networking Sites.
Health AGEnda discusses a recent article calling for improved training in geriatrics for primary care physicians: Report From The Brain Trust.
HealthBlawg tells how electronic health records will soon be required as a condition of licensure for doctors and healthcare centers in Massachusetts: HIT Incentives In Massachusetts: Less Carrot, More Stick.
HealthNewsReview comments on Senator David Vitter’s recent request to have the U.S. Department of Health and Human Services remove breast cancer screening recommendations from its website: Senator Strikes Out By Politicizing Mammography Recommendations.
How To Cope With Pain explains that change is hard and offers the helpful advice of trying “half a habit” at first: Change A Habit Slooowly.
In Sickness And In Health (U.K.) summarizes new research that suggests that Viagra may improve the delivery of chemotherapy drugs in women with breast cancer that has spread to the brain: Viagra Could Help Women Too, But Not How You Think.
In Sickness And In Health (U.S.) writes about couples and illness, describing how other relationships in your life can affect your health or your partner’s health: My Mother, My Partner?
Jill Of All Trades, MD provides a public health doctor’s tips for patients who don’t have health insurance: My Top-15 Resource List For The Uninsured.
Laika’s MedLibBlog highlights research on how lack of sleep can affect your risk for obesity, diabetes and heart disease: What One Short Night’s Sleep Does To Your Glucose Metabolism.
Lockup Doc talks about when non-psychiatric illnesses in people with mental health histories are minimized or dismissed by healthcare providers: Psychiatric Patients With Medical Illness May Not Be Taken Seriously.
MD Whistleblower warns that dentists’ habit of overprescribing penicillin has “serious consequences” for patients: Why Do Dentists Prescribe Antibiotics So Often?
MedInnovationBlog talks about the obsession Americans have with medical technology and how it affects healthcare: Americans And Their Medical Machines.
Mental Notes debunks myths about depression after childbirth and reports on a recent study that used PET scanning to identify new moms at higher risk: What Causes Postpartum Depression?
Novel Patient shares thoughts on facing life’s difficulties and how to keep a positive attitude: Seeing Double.
Nutrition Wonderland presents new research on obesity that helps explain why dieting doesn’t always work as expected: When Cutting Calories Doesn’t Cut It.
Nuts For Healthcare says that “big pharma” should pay attention to significant advances in vaccine development: Vaccines, Vaccines…And How We Got To Provenge.
Supporting Safer Healthcare highlights confidentiality concerns about using portable data devices to store sensitive healthcare information and patients’ medical records: Lost Data Causing “10-Out-Of-10” Pain For Healthcare.
Suture For A Living tells the story of a recent brush with domestic abuse and provides resources to get help if you need it: Domestic Violence.
The Covert Rationing Blog conducts an “intervention” on behalf of two fellow medical bloggers in regards to American obesity, discrimination, and “demonizing” the obese: Defending The Anti-Obesity Movement, Again.
The Examining Room Of Dr. Charles tells the story of how a patient triggered memories of a doctor’s first experience with human anatomy: White Silken Ribbons.
The Happy Hospitalist says one group of physicians at his hospital wants to be compensated for their time on call: Should Hospitals Pay Doctors To Be On Call?