Streams

Tabloid Medicine

Monday, December 20, 2010

Every day, nearly 8 million Americans search the Internet for medical advice on everything from skin rashes to cancer treatments. Dr. Robert Goldberg argues that consumers should be wary of the instantaneous medical advice found online. In Tabloid Medicine: How the Internet Is Being Used to Hijack Medical Science for Fear and Profit he argues that the Internet can be used to scare the public, and that hidden agendas can undermine public health.

Guests:

Robert Goldberg

The Morning Brief

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Comments [15]

There exists a wealth of medical information online about conditions, communities to find people with the same condition, and educational resources better than any ten medical schools has ten years ago. Interactive tutorials, original research papers, and encyclopedia entries abound! Indeed, as mozo, RJ, and others have noted, there are walls up around some of the content and a great deal of bias often. Certain sources may be advertisements and they might not be clearly labelled as such. This, however, is not vastly different than any other aspect of what you find online. Do you trust an ebay seller that has no previous sales or negative feedback?. Would you take advice on televisions from ConsumerServices.com rather than ConsumerReports.com? Probably not.

The big difference in medicine is that the stakes are higher. There is no manufacturer's warranty printed on our backsides and we can't return bad medical care because it wasn't what we ordered. Add to that the rising costs and plain old complexity of the issues and you have a recipe for failure.

So what is the solution? I recommend three actions we can all take.

First and foremost - take charge. Understand that you are responsible for knowing all there is to know about your body and your condition. You are the captain of your own ship and no one else cares about you as much as you and your loved ones do. Most healthcare providers do care, but it is not the same level as you ever will. Consider that they need to harden themselves to the pain of caring deeply about every patient, a harsh irony for a profession that is populated by people who generally entered it to take great care of people.

Second, self-educate. Read everything you can, go to the forums, engage with the information, ask the experts and other sufferers questions. Cross reference and test for validity. There is almost nothing so complex about biology that most people can grasp. Patient communities like patientslikeme.com, dlife, and ACOR.org are amazing resourses. Often people connect online better than to friends and family who "just don't understand" what it is like to be infertile, lose a limb, suffer from ulcerative colitis, or myriad other problems. Twitter is great for this too.

Thirdly, get a professional partner. Search for and seek the best professional(s) for your condition because having the best doctors makes an enormous difference. Seek one that not only is expert in your condition, but embraces your partnership in your health and is willing to consider your opinion.

All of this adds up to patient empowerment, becoming what is called an "ePatient." I recommend ePatientDave.com for further reading.

Good luck. if you need help, look me up. I recently launched a website that, among other things, is dedicated to that third step.

Dec. 21 2010 09:09 PM
blabla from nyc

I heard is that one "association" educating the public on a particular disease received funding from a pharmaceutical company that sells a remedy for that disease. How does one verify this and determine if the info is biased?

Dec. 21 2010 02:43 AM
Mary from Bronx

Do NOT use Google for your medical search!! NEVER.

Start with http://www.medlineplus.gov
This is published by the National Library of Medicine and has useful search features, links, and videos. It has excellent (though mainstream) drug information.
Continue with http://www.noah-health.org/ which has links specific for the NYC area, as well as trustworthy in-site information

A more or less equivalent UK site is http://www.intute.ac.uk/medicine/

A search on http://www.hon.ch (Health on the Net Foundation) takes you to "vetted" sites. Try http://www.hon.ch/HONsearch/Patients/all_search_v3.html to find other search sites.

To find journal articles, use http://www.highwire.org which links to a wide variety of medical journals, many of which provide free access.

Dec. 20 2010 01:06 PM
BJK from Queens, NYC

The mental health experts that have appeared on this program (and others on NPR) many times neglect to mention the distinction between 'unipolar' and 'bipolar' depression, which often manifest the same way.
It is hard for a person with a bipolar illness to receive a correct diagnosis without evidence of a manic episode. If a major depressive episode occurs first, the first-line therapy of an SSRI as an anti-depressant may 'tip' the person into a manic episode. This state is very dangerous, and it seems to me that there have been such cases which have led to suicide.
Any psychiatrist who prescribes SSRI medication to someone for the first time should exercise extreme caution with this.

Dec. 20 2010 12:48 PM
Amy from Manhattan

Leonard, I hope you'll put up links to all the sites Dr. Goldberg mentioned. And in regard to your final exchange w/him, I wonder if he'll have a chance to go on NJN while it's still public?

Dec. 20 2010 12:43 PM
Amy from Manhattan

How often is suicide a direct result of the antidepressant drug & how often does it happen because patients aren't told it can take several weeks before the drug's effect begins, or have trouble sticking to a difficult dosing schedule, or stop taking the drug & have a rebound effect, or were so depressed they didn't even have the energy to kill themselves before they took the drug (& yes, this is really known to happen in some cases)?

Dec. 20 2010 12:38 PM
stealinghope from NY

conflicts of interest? it's evinced in our back yard: www.sloankettering.wordpress.com “Sloan is pursuing a systemic approach to reducing expenses and increasing revenues […] One example of this is discouraging terminally ill patients from seeking initial treatment or second opinions from the cancer center […] the admission of such patients is counterproductive […] to Sloan Kettering.” [paraphrasing salient features, MSKCC, CFO/Chief Financial Officer] The mission of Sloan Kettering / MSKCC is nonpareil. There are instances of brilliance and selflessness. There are also too many instances of egregiously unnecessary and inappropriate craven self servitude, shameless self promotion, a completely unnecessary and inappropriate intermittently palpable disingenuousness (whose transgressors ought to be ashamed of themselves considering that they clearly know better), conflicted interests, invocation of the follow the money syndrome, a bizarre confluence of facilities management shortcomings (see OSHA) that could impeach the credibility of reaction conditions and thus scientific results, curious navigation of the who works for whom (Public Affairs or Facilities for SKI/MSKCC, or its converse) conundrum, a ruse invoked to promote a much needed and ballyhooed replacement research building, thinly veiled attempts to sweep the above (and other curious anomalies) under the rug (by puppets from the Research Resources Management and/or MSK Facilities Management divisions) as well as people who (though they know better) by their actions would steal hope in variance with MSKCC’s mission of steeling hope.

Dec. 20 2010 12:38 PM
Hal from Brooklyn

Medicine relies on science.
Pharmaceuticals rely on marketing.
Healing relies on love.

Dec. 20 2010 12:35 PM
Joyce Jacobs from Teaneck NJ

The real problem is that people do not know how to do medical searches on the internet. You cannot just key in the word 'Crestor'. You have to ask a specific question about the side effects of Crestor and then you have to be very careful of the sites you get your information and keep searching until you get a real medical site - not just opinions from other searchers.

Dec. 20 2010 12:33 PM
Hal from Brooklyn

It's not cost effective for doctors to really get to know, care about, and do their homework for each and every patient.

Furthermore it's quite a challenge for the average patient to determine what is reliable information.

Dec. 20 2010 12:30 PM
RJ from prospect hts

When I've attempted to do deeper study, I find that the original papers of scientists doing the research are unavailable to the general public; they are only available through institutions, universities, etc., that subscribe to expensive journals where the papers are published. I will some day go up to the National Academy of Science library to get what I need, but that should not be required to have an educated public.

Dec. 20 2010 12:28 PM
C

Are there sources we can trust online, the Mayo clinic for example?

Dec. 20 2010 12:22 PM
Sandy

I was diagnosed with endometriosis a couple of years ago and my OB/GYN pushed me towards starting a hormonal treatment after the scheduled necessary laparoscopy. The hormonal treatment prescribe was twice the dosage usually prescribed by doctors and more than half the dosage of clinical trials. When I questioned him on it, he brushed off my concerns even though I had done research online from reputable sources that showed the raw data and methodology use. I was lucky enough that he injured his back and could not perform the laparoscopy and I ended up with another OB/GYN otherwise I would have taken the hormonal treatment because I was not brave enough to challenge the doctor at that time.

Dec. 20 2010 12:20 PM
Amy from Manhattan

Actually, some medical conditions (like lupus) are diagnosed based on the patient's having, say, any 4 out of 6 symptoms--you don't necessarily have to have all of them. But frankly, I think the criteria for nearly all diagnoses should be reviewed periodically to see if they're still valid based on the latest knowledge.

Dec. 20 2010 12:15 PM

I'm looking forward to this. The Internet is fertile ground for amateurs and frauds. Consider the case of Marcus Arnold, a 15-year-old who said he was Justin Anthony Wyrick Jr., 25 and a "law expert with two years of formal training in the law" and became the resident legal advisor on askme.com.

Dec. 20 2010 12:11 PM

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