For several informative empowered patient stories, see the Comments at bottom of this post.
CNN’s Empowered Patient column, by medical correspondent Elizabeth Cohen, contains good, if not groundbreaking, advice, plus the occasional exaggeration or misconception.
For example, here on e-patients.net, Charlie Smith praised the Empowered Patient column on misdiagnosis; Gilles Frydman dismantled the tips on “savvy medical surfing”; and John Grohol critiqued the article about “how to find a doctor online.”
I think it is excellent that CNN allows reader comments, which are sometimes well-argued attacks on the content of the article. CNN also features a “From the Blogs” section, although the links are not always relevant since they are machine-generated. Bottom line, CNN is on the road to having a very good consumer resource on their site.
However, it could be even better.
Let’s take the recent “5 mistakes women make at the doctor’s office.” I don’t love the title, but I understand the instinct to scare readers about their personal failings (see my own small role in “Lies Parents Tell Themselves About Why They Work”).
Cohen opens with a story about a mom who was intimidated by doctors but screwed up her courage, identified a misdiagnosis of irritable bowel syndrome and got her daughter treated for ulcerative colitis. The empowered patient triumphs, right? Read on.
Cohen goes on to list the 5 mistakes: women don’t question doctors, tend to over-research, don’t recognize gender bias, interpret their own symptoms, and don’t trust their intuition.
Here’s where things get interesting. In the 24-hour period during which comments are accepted, more than 50 people offered their personal stories, observations, and wisdom.
“Elle” clarifies that it probably wasn’t a misdiagnosis, but rather a too-generic one.
“Mapslaura” throws even more cold water when she writes:
I am appalled that the new doctor removed the poor kid’s colon. I had ulcerative colitis as a teen. It was really painful and a difficult disease. However, after a lot a work I found meds that help and then diet. Diet was so important. By my mid-twenties things were so much better. By my forties my colon had healed so well you couldn’t find the scars anymore. Now in my 60s I have a pretty healthy IG tract. The second doctor’s treatment, in my opinion, was wrong, too extreme, and the girl will suffer other problems as she gets older.
“JG, MD” writes, “If there is no randomized study with evidence then this article is opinion and flawed. To say that these are “mistakes that women make” IS a statement that is biased against women. In my practice, men and woman make these mistakes equally. It is not a problem with gender. That is a generalization and a stereotype and cannot fit the behavior of all women or men.”
“Anonymous” writes, “It’s not helpful to say that women over-research AND should trust their intuition. Those are competing pieces of advice.”
Many comments echo the “I am woman, hear me roar” sentiment, however:
“Karen” tells of a friend who pushed her doctor for the appropriate tests to confirm her suspicion that she had non-Hodgkins Lymphoma (after researching a persistent rash online).
“Debbie” writes, “Internet research is NOT a bad thing, especially when it comes to medications and side effects… Ladies, RESEARCH….ASK QUESTIONS…SEEK EXPERT HELP!! No one cares more about your well-being that YOU do!!
“Carol K” writes about a doctor who, when asked about a treatment, responds by saying, “Who has the degree, me or you?” Her intuition led her to insist on a test which revealed a rare blood disorder.
If the comments were still turned on, I would write that Pew Internet research does indeed support the assertion that women are more likely than men to research health information online (and thanks for citing our research!). However, I take issue with Dr. Pamela Peeke’s observation that “her female patients are more likely to become overwhelmed by what they read.” In fact, we asked that exact question in a survey and found that there is NO difference between women and men:
At any point in your last search for health information online did you feel overwhelmed by the amount of information you found online?
25% of internet users who have researched health information online said yes (26% of males; 25% of females)
(Methodology: n=1,990 internet users surveyed by phone August 1-31, 2006)
It’s important to note that there were no differences between men and women for any of the following questions:
74% of e-patients felt reassured that they could make appropriate health care decisions,
56% say they felt confident to raise new questions or concerns about a health issue with their doctor
56% say they felt relieved or comforted by the information they found online.
51% say they felt eager to share their new health or medical knowledge with others.
22% say they felt frustrated by a lack of information or an inability to find what they were looking for online.
18% say they felt confused by the information they found online.
10% say they felt frightened by the serious or graphic nature of the information they found online.
I hope that Elizabeth Cohen and CNN see reader comments for what I think they are –improvements. What other improvements do you suggest?
Matthew Zachary says
Even more evidence substantiating the need for targeted, consumer-driven online empowerment but from *trusted*, *credible* and *reputable* sources. Also remember, people, your doctor isn’t your friend. You hire him to take care of you. Like with any service, if you don’t like it, find another one. Granted I wish it could be that simple for all of us but at least this is progress.
e-Patient Dave says
Okay, I’m on the patient side of things, so I’m going to put on my “impatient e-patient” hat and say:
Come ON, who’s kidding whom here??
Did somebody edit that and tone down its encouragement, so women won’t go and get all uppity or something?? (Oops, 36 years too late.)
Somebody seems to be disempowering CNN’s robotic blog-tracker, too. It’s edgily titled “From the Blogs: Controversy, commentary, and debate,” and when you click to open it, it cheekily says “Sit tight, we’re getting to the good stuff.” But what does it come up with? Non-stuff: three web sites that merely post a copy – no commentary a-tall, much less debate.
You want controversy? Fasten your seat belt and read this no-anaesthetic dissection on the SpaceFem blog, which starts thus:
e-Patient Dave says
Methinks an Empowered Patient column is doomed to miss the mark if it’s written from the perspective of doctors warning patients what to look out for. It’s rather like men trying to figure out what women want, instead of asking them.
I mean, how extraordinary is it that a column called “Empowered Patient” would post something titled Are you an obnoxious patient? (Check out the comments on THAT one, too, for another earful: “Should retitle, Are you an obnoxious doctor”, etc.)
There are plenty of places to get warnings about how to be careful. What we (the patients!) need more of is stories from the patient’s perspective: “How I helped beat the odds by participating in my care.” For that, read the e-patients paper “e-Patients: How they can help us heal healthcare” (977k PDF). Written mostly by doctors, but right on the mark. Woohoo!
Gilles Frydman says
Suggestions for improvements? How about starting by giving an equal voice to already empowered patients? I know, this would be a new concept! But after all the “empowered patient” column starts with “Empowered Patient, a regular feature from CNN Medical News correspondent Elizabeth Cohen, helps put you in the driver’s seat when it comes to health care.” Unfortunately the “Empowered Patient” column is currently written for all the patients who will never become empowered! It’s tone is condescending and perpetuates the myth of the Doctor knowing more about the patient experience than the patients!
Don’t you think that expert users of the internet, those we call e-patients, should be used in this column as authoritative sources? There is a lot of knowledge available from empowered patients. These are the people with the real expertise about the patient experience. Their voice should be heard on an equal basis with the voice of health professionals who mostly treat diseases and very rarely deal with illness.
Improvements? Let’s continue with the title “5 mistakes women make at the doctor’s office”. Written by empowered patients the column title would have been positive. Something like “5 points you should remember to improve your next doctor’s visit”.
The 5 points as they are written are:
1. Women don’t question doctors
2. Women tend to over-research
3. Women don’t recognize gender bias
4. Women interpret their own symptoms
5. The mother of all mistakes: Women don’t trust their intuition
could be rewritten this way:
1. Ask your doctor to explain his rationale. if he/she doesn’t do it, it’s time to find another doctor.
2. An educated patient is a better patient and can often receive better medical care.
3. Gender bias is a reality but no one knows how to deal with it.
4. Educated patients know their limits. Although they know their body better than ANYBODY else, they rely on good clinicians to diagnose medical problems.
5. See above. You know your body better than anybody else. Listen to your body and follow your intuition.
Gilles Frydman says
Let me dissect a little more the column that Susannah mentioned. Besides the story used as the basis for the article 3 female doctors are used for the quotes regarding the 5 points. They are Dr. Christiane Northrup, Dr. Pamela Peeke and Dr. Nieca Goldberg presented as authoritative sources. But the 3 are media personalities with a very active schedule of presentations across the US and involved in many media activities. The 3 have a similar business model, presenting themselves as experts able to educate women to get better. Talking about how educated patients can take good care of themselves kind of kill the business model, don’t you think?
Additionally I wonder how many patients each of these doctors see in any given month. After all Dr. Peeke must be seeing lots of patients to state authoritatively that “her female patients are more likely to become overwhelmed by what they read….. Women are much more likely to come in with hundreds of pages of Internet printouts under their arms, and they’ve become convinced they have all sorts of diseases”. This is from the same Dr. Peeke who manages her weekly retreat. I don’t know about you but my doctors are just too busy treating patients to organize “health retreats” costing $4K for a week. Maybe Dr. Peeke attracts women who are of a special kind, those who are unable to use the internet as so many other people do, to become educated and to prepare short summaries that are used to better manage the few minutes they have to discuss their case with their clinician.
The column also states ” The solution: Some experts recommend doing research on the Internet and writing down the most important points rather than carrying in numerous printouts. That way, you can have a more focused conversation with your doctor.” Who are these experts? Why the need to present this information again in a hierarchical manner? Join an ACOR group and in 10 minutes if you are newly diagnosed you will learn how best communicate with your doctor, bringing limited but focused printouts. The metaphor of the internet patient bringing reams of papers is OLD. It gives the impression that the “experts” mentioned by CNN have become frozen in time.How about writing the column for 2008 and beyond?
Susannah Fox says
I think we’re on a good track here – where else besides ACOR and i2y.com can reporters find “real” e-patients?
Dave, I followed your SpaceFem link and found this hilarious blogger dissecting not just the CNN column but the evidence base for internet health resources and gender. Here’s a quote that made me burst out laughing:
I do love how search engines make suggestions, tho, particularly after someone gave me the tip that non-English speakers use Google to check their grammar and spelling. I started doing the same when I (rarely) need to write in French. And many times I have typed in what I think is a drug name or a medical condition, only to be corrected and set on the right path.
Mark Scrimshire says
I believe there is the potential to transform healthcare by intelligently harnessing the wisdom of the crowds. There are examples that demonstrate this where people with similar diseases can share their experiences and increase the body of knowledge.
We are on the verge of a transformation in Healthcare. One that will involve Social Media, data portability standards and web 2.0 technologies. There is a meeting of minds for Health care and technology professionals and the community at HealthCampMd being held in Owings Mills, MD on June 14th. Check out http://barcamp.org/HealthCampMd for more details.
Gilles Frydman says
Where else besides ACOR and i2y.com can reporters find “real” e-patients?
They exist in countless places! That’s the beauty of it. And what makes it so difficult to study.
Millions of people are already applying principles of participatory medicine to their care, usually unaware that millions of other patients are similarly helping themselves by getting educated, equipped and empowered. This is true for most of the individual groups located at yahoogroups and is equally true for unique groups for rare diseases existing completely on their own like the fronto-temporal dementia support forum.
I have a more cynical view of the CNN empowered patient column. As several of you noted above, the effort may be useful in some ways,, maybe. But, I wonder if the following conundrum is worth discussing (Ok, I’m a child of the un-televised, revolutionary 60’s, Sorry, but you’ll have to put up with my retro paranoia).
CNN is, when all is said and done, a large corporation. As such, it has a bottom line, and a product to be “sold”. In this case, we could debate the product, but I would venture to say it’s not advocacy for a major change in the health care sector. On the other hand, the e-Patient revolution is essentially a populist movement. The changes will not be incremental or in the best interests of entrenched corporate interests. Thus, are efforts like CNNs empowered patient blog actually subversive of the e-Patient movement?
Susannah Fox says
Dan, I relish the opportunity to speak up for my cohort (realist Generation X) and say, why so cynical, Boomer friend?
CNN is a corporation, but I believe the reporters involved in the Empowered Patient stories do want to help people (as well as build traffic and deliver people to their advertisers). And at a certain point, don’t you think it will be an interesting development when a populist movement becomes so widespread that CNN wants to cover it (even become part of it)?
But maybe my dot-com roots are showing.
Donna Johnson says
I would like to take the questionnaire regarding all the different meds my mother is taking. Where can I find the questionaire on line.
e-Patient Dave says
Hi Donna – I don’t know how to reach you, and I’m not sure what questionnaire you’re talking about. Please write me at epatientdave *at* comcast *dot* net.