(To help you visualize the scene, see the famous Coca-Cola Santa image. Now imagine Peter Frishauf asking Santa for that train set!)
Dear Santa,
I always believed in you Santa. All those kids who said it wasn’t true, you weren’t real, well guess what: I knew you were.
I wanna tell you, Santa, life is hard for us e-health boys and girls.
Trouble started last month. There was this article, “Lies, Damn Lies, and Medical Science.” Santa, you wouldn’t believe it! They’re trying to tell me that all that scientific medical evidence that come out of academic medical centers isn’t all true. Just like you, Santa.
It gets worse, Santa. A bunch of new people are saying bad things about all those free e-health sites, you know, like AOLHealth, Everyday Health, HealthCentral, Healthline, MedHelp, Patients Like Me, QualityHealth, WebMD. At least they didn’t mention one of my favorites, Mayo.com., although they did throw in Google and Microsoft for good measure.
You’re right, Santa, I meant MayoClinic.com. Yes, Santa, I know you love mayonnaise. And now I know you visit mayo.com all the time. I thought your tummy was from bowls full of jelly.
So here’s the thing, Santa: This group has gone and told the government, you know, the FTC, that these sites have been BAD, that all they get for Christmas is a lump of coal.
Yesss… Santa, I know the coal industry doesn’t advertise on health sites. Can I finish?
O.k., so they’re saying these free sites, aren’t REALLY free Santa – that they’re just tricking us. They get our names, Santa. Then they find out the stuff we think is interesting. Then they tell marketing people about us Santa. And they try and sell us stuff. Someone spends money and they make a profit so if someone’s paying, it can’t be free, right, Santa?
What do you mean, Santa: “How do you know I’m not doing the same thing?” You’re Santa, Santa!
Wanna know just how bad these people are, Santa? You wouldn’t believe it. They tell people to go read their privacy policies. Like, you know, the one on Patients Like Me. I printed it out, Santa ,so you can see how bad they are, cause they say right on their home page that I can:
Learn all about us. Ask us anything. Why do we embrace openness, and what about your privacy? How do we make money and who are our partners? Take a moment to read this and find out.
So that’s bad, right, Santa? I mean they say, “We take the information patients share about their experience with the disease, and sell it…” That sounds really bad, Santa. And these bad sites, Santa, are my friends, so that must make me bad too.
Another thing, Santa. When I started Medscape back in 1995 it was free too, and we told everyone they had to give us their names and we would know their interests and then they would get both noncommercial and commercial information. I got lots of fan mail, saying it’s good, Santa. Still do, even though I haven’t been there for years. Never got a complaint. Millions of people of people say they love it, just like they love you.
What do you mean, Santa, you think it’s o.k., as long as they tell you what the deal is? And what do you mean, “I work for Macy’s?”
Yes, Santa, I do want the train set. Those nice people at Macy’s let you set up shop so you can find out who’s been bad and who’s been good. No, I wouldn’t like it if I had to pay to see Santa.
So, Santa, if those academic studies are bad, if all these sites are bad, and you can tell the government on them, that must mean the government health sites are good, right Santa?
No, I didn’t know that in the 90s, the government’s CDC site said that condoms were good, and then between 2002 and 2008 they said they were bad, and now they say they’re good again. They must have heard it from the Pope. I hear he likes condoms now, too. He’s good like you, Santa. Or maybe we’re all just fools, damn fools.
(Thanks to Mark Boulding for pointing out to me, way back in 1999, the critical distinction between Mayo.com and MayoClinic.com that is so important to Santa.)
___________
Suggested Readings:
- Frishauf, P: Fixing Those Damn Lies, October 20, 2010. E-patients.net. Accessed 11/29/2010.
- Singer, N: Privacy Groups Fault Online Health Sites for Sharing User Data With Marketers The New York Times, November 23, 2010. Accessed 11/29/2010
- FTC Complaint against Google, Microsoft, QualityHealth, WebMD, Yahoo, AOL, HealthCentral, Healthline, Everyday Health, and Others filed by the Center for Digital Democracy, U.S. PIRG, Consumer Watchdog and World Privacy Forum. Accessed 11/29/2010 at http://www.ftc.gov/os/2010/11/101123publiccmptdigitaldemocracy.pdf
I cut my professional teeth in a forensic-level environmental lab, and, anymore, some days I have trouble knowing WHAT to believe when it comes to health care and medical science.
Mayonnaise, like information, wants to be free….
Great belly laugh, Peter. I needed that! You might send it to the FTC as part of the record in the Petition by the Center for Digital Democracy!
Every commercial website today — from the Huffington Post to the New York Times — uses the same or similar ad-tracking technology (including MayoClinic.com). To discriminate against health websites as though they were somehow unique is silly.
When I was looking to buy a new car a year or two ago, nearly every commercial website I went to displayed ads related to the cars I was looking at. This is the modern marketing tracking machine that is an ingrained part of today’s web, from Facebook to your local newspaper’s or favorite blog’s website.
I embrace this sort of targeted advertising and only lament that it’s completely ignorant of actual behavior (e.g., long after I actually purchased a car, it still showed me ads for cars). I much rather ads I want to see than ads for feminine hygiene products (which I mercilessly have to sit through while watching television with my mom a few times a year).
Can somebody please say something bad about our free health info web site?
http://bit.ly/e5ptK8
Sure thing, Mark. It only took a minute to find something negative to say. Your database scrape algorithm sucks. For just one example, I clicked abortion to test, and I was directed to this article: http://ow.ly/3neij
What does that have to do with abortion? To be fair, I tried another category, cancer, and got this: http://ow.ly/3neoJ Again, not a clear tie to the subject.
Can’t say I’d recommend wasting time looking to your site for important health information.
Finally, I think the site has too much emphasis on alternative medicine, which I consider primarily nonsense. Your mileage, as the kids used to say, may vary.
Bad enough for you?
This is about the public health, and online safeguards are important for patients, their families, and medical consumers. Clearly, the industry isn’t getting the kind of ethical leadership from online columns such as this. Luckily, the FTC is taking our complaint seriously. Even Santa deserves consumer protection online in the health area.
Oh, boy. I was surprised to see a post like this on this website. This doesn’t seem to be patient-centered at all, in my opinion. It seems to be a rant against actions by an advocacy group that are meant to actually protect the public from being even more misled.
1. Being transparent about conflicts of interest and bias doesn’t make them go away. Furthermore, if the point of transparency is related to ethics, then the goal of disclosure shouldn’t be to make people trust you more, but to give people more information so they can more critically interpret your message.
2. Posting privacy policies on websites does not necessarily equal transparency. It checks a legal box first, and then maybe, if we’re lucky, the information is also usable by some portion of consumers. There are exceptions, but they are just that: exceptions. Again, where are the ethics here?
3. All products and services are not created equal, and not everything should be “marketed.” Pharmaceuticals are as dangerous as they are helpful and the context around them is misleading to patients. Advertising them creates demand for dangerous products that are regulated for a reason – and you even reference an article that talks about the issues with scientific medical evidence.
4. I got the sense that you were arguing that since all evidence is problematic – even the so-called trustworthy stuff – we might as well stop being so critical of commercial health information sources. This is a fallacy-based argument. Different types of issues exist in these various info channels, and we should remain appropriately critical of all of them.
I don’t usually post such negative comments, but I really couldn’t believe this was posted on e-patients.net.
Folks, I consider myself a fairly empowered and patient-centered guy, wary of commercial trickery; I’ve spoken at several conferences warning people in industry to be forthcoming and transparent, and warning people out of industry to be wary.
See my talk in Sept. 2009, Engage Authentically. And almost three years ago I wrote of my suspicions about Google’s motives in creating Google Health. So I don’t think I’m naive.
But I don’t see what the problem is here. I haven’t run into a soul who feels duped or subject to trickery by this. Have there been tales of harm? Of trickery? I’m open to learning.
Please let’s have an open discussion. If there’s some reality we’re not aware of, let us know. But as others have said, and as I’m sure you know, this is practically a universal technology, not restricted to healthcare. (Right?) Why then limit your complaint to one field?
Looking forward to good dialog –
Dave
Dave,
Good to finally “meet” you! I have heard lots of good things about your writings and work, and I definitely wouldn’t consider you naïve. Thanks for pushing back in such a respectful and democratic way.
My concerns are at a very basic level – I think there are some conclusions being made here that are based on logical fallacies.
First, I don’t think an unaware public is the same as a naïve public. Naivety suggests a lack of knowledge based on a lack of experience, and I’m not saying the public lacks experience. However, I am saying that the public cannot know what it doesn’t know or have access to – its choices are restricted based on what information is presented. Further, our choices are restricted and affected by the usability of the information (how it is presented.)
Second, I don’t think the fact that you haven’t run into a soul who feels duped means that such souls don’t exist. That’s the scary part. We sometimes don’t know when we are duped.
Third, the use of terms like “duped” and “trickery” makes this seem personal in a way I didn’t intend. I’m not suggesting any individual at any commercial health site is nefariously tricking patients into taking bad pills. I’m saying there is a systematic issue with information flow, use, and presentation, and that this issue is a product (in part) of misaligned incentives, and that it misleads the public.
Fourth, I agree this is a universal technology, and I would argue the issues I described above are present across fields. I am limiting my complaint to commercial healthcare because the stakes are higher. If I buy the wrong notebook computer based on my “information world” (which is what this technology helps to create), that’s much different than demanding and taking the wrong drug, or a drug for no reason.
Fifth, if they marketed stun guns or tasers the way they market pharmaceuticals, I would have a problem with that too. It’s not the thing itself, but the creation of consumer demand/false expectations around the thing. It leads to misaligned incentive structures – and if incentives don’t support your ethical basis, you can end up acting in opposition to that ethical basis. Then it becomes very enticing to rationalize how your actions actually are ethical. Or to ignore issues of ethics completely.
Sixth, practical reality means that sometimes you can only limit your argument to one field, or else your argument is way too abstract/conceptual and thus ineffective. Plus you’ll be arguing all day! ;-)
Sorry that was so long, but I really did want to explain where I’m coming from, because I really do feel this is an important issue for everyone.
Sincerely,
Jillian
Jillian, I’m just getting back on the air after 2.5 weeks with a dead computer, doing everything by netbook and phone. It’s been nasty. And tomorrow I start another 8 day trip. So I promise to think and reply when I can but it may not be immediately. Don’t hesitate to drop me a reminder; see the Contact page on epatientdave.com.
Jillian,
So, it’s four weeks later, and I think my head just popped up through the heap. Finally got my tech stuff back in order and have been digging out.
Before I reply to your latest, I want to confirm that we’re talking about the same thing: the complaint asserts (per the executive summary) that data is collected and used to develop profiles of individual users and target content at them. Is that basically right?
(Don’t worry, I’m not going to use that later in some legalistic way to say “But you said” – I’m only looking to see if I understand CDD’s point.)
Bullets 5 and 6 talk about seemingly-but-not-independent websites and testimonials; I too feel strongly that funding of all such things should be clearly labeled.
Other than that, do I understand your basic point correctly?
Thanks, and happy new year –
Dave,
Welcome back, and Happy New Year!
Yes, we are talking about the same thing – the complaint described at the link you posted. The only thing I would change about your summary is that this specific complaint from the CDD asserts that data is collected and used to develop profiles of individual users and target drug- and health-related content at them; and that this practice is unfair and deceptive.
I’m taking it a step farther by saying that it is also unethical and a danger to public/patient health. I think direct-to-consumer advertising of drugs/healthcare products does not promote (and is counter to) a healthy society.
The opinion article above (“Fools, Damn Fools…”) seems to be making fun of the CDD for their actions. Since the CDD’s actions in this instance seem pretty patient-centered to me, I was confused about why this article was on e-patients.net.
Hope that helps – thanks!
Jillian
Hi again Jillian – I see your view, and I hope you see mine… from the people I know (and I mean in my life, not just here), I see little or no chance of harm coming from these ads.
I used to work in online marketing, so I know the frequency (very low) with which people click Google Ads. More to the point here, though, ads within web pages have a much lower click-through frequency.
But, as I say, I’m always game to learn of things I wasn’t aware of.
The other aspect is that I’m a pretty strong believer in personal responsibility, and being empowered, educated, engaged, thinking for oneself, etc. Doctors often warn that there’s crap on the internet; but as my speeches often say, who doesn’t know that? The empowering approach I recommend is to teach people how to filter.
For instance, during last winter’s hearings about the meaningful use of health IT, some argued that patients were unable to deal with what they might read. My testimony, posted here, included the rhymed suggestion “The solution is not to withhold and constrain. Empower the people – enable, and train.”
I hope you can see that I agree that the issue exists – I just don’t see a probability of harm, and in any case I personally am much more interested in empowering and training.
Re the tone (your “making fun of” point), I understand that author Frishauf will be back in the saddle and able to reply this week.
Best,
Dave
Group,
It’s good to see healthy debate arising from my tongue-in-cheek post.
Yes, I did poke fun at the FTC complaint, because I don’t believe Internet users are having trouble recognizing commercially-sponsored messages for what they are, any more than we recognize that Santa is at Macy’s to sell us something. I have no problem that the FTC takes the issue of ad tracking seriously and is going to look at it.
To be clear: I support clear disclosure on what the deal is for users of a website, and, as cited in my post, Patients Like Me is a model of clarity. I also like advertising-supported web services and mobile apps that offer users a choice: get the content/app for free with advertising and/or tracking, or pay for an ad-free/track-free version. The nonprofit user-supported model, like Wikipedia also works for me, and I contribute every year.
So make the deal clear, and I’m a happy camper whether you’re Ford or Pfizer. And yes, I understand, healthcare is different. (After all, many more people are killed and injured by motor vehicles than by drug treatment:).
Jillian writes, “I think direct-to-consumer advertising of drugs/healthcare products does not promote (and is counter to) a healthy society,” and that “Advertising them creates demand for dangerous products that are regulated for a reason.” Jillian and others would have such activity prohibited and wonders how it’s even possible that a site that advocates for patient empowerment might host a contrary view.
While it was not the subject of my posts on this site, I believe we benefit from access to truthful medical information or data including that on commercially-supported product websites and advertising (both of which are heavily regulated and scrutinized in countries that permit them). I agree with Jillian that “Different types of issues exist in these various info channels, and we should remain appropriately critical of all of them.” My view is that this is the crux of the issue: bad, wrong, dishonest, misleading information, regardless of source (commercial, academic, nonprofit or government), should be called to account. I have proposed one method, a Reputation System that might make that happen. See http://bit.ly/hvRw8x
I think it’s a good thing that industry wants and values a direct relationship with its customers, that these relationships enhance rather than diminish the other relationship a patient has with health experts and other sources. I’m a healthier person, a better patient, and have better relationships with my clinicians because these services are available. Thanks to the Internet, we can all get along, even in countries outside of the U.S. and New Zealand that prohibit DTC advertising. Visiting London and really want to visit lipitor.com? No problem. Want great drug information on Wikipedia curated by experts from industry, academia and even self-trained experts? Go for it!
Finally, please let’s not forget that most people (I am guessing that includes all those who have commented on this post) are completely shut out of getting their own digital health data quickly, at no cost, and in a format that is meaningful to them and their clinicians, a situation that hurts patients, and wastes billions of dollars and hours. I wish more energy would be directed at getting information out and accessible than at keeping the advertising genie in the bottle.
(NB: For those looking for more historical information on DTC advertising, I recommend these posts by Ishmeal Bradley on the KevinMD blog: http://bit.ly/cxEA72. To contribute to Wikipedia: http://bit.ly/hvRw8x).
Dave and Peter,
Yes, this has been a great discussion. I think, in the end, we’ll have to respectfully agree to disagree.
I can see how direct to consumer (DTC) advertising of pharmaceuticals seems innocuous on the surface, especially on the web – nobody clicks those ads, people don’t see an ad and run out and beg for meds, we are smarter than that, etc.
I can provide lots of evidence that clickthroughs on adverts are not a good standalone measure of their effects, so I respectfully don’t buy that argument. Also, we may disagree about what effects are important. I think we have a very Prozac Nation culture right now, and that DTC advertising is a big facilitator of that. I think – but admittedly haven’t researched – that this “a pill will fix it” culture is bad for our health, erodes our self-efficacy. You just can’t measure that with clickthroughs.
Furthermore, methodologically speaking, there are all sorts of issues with pharmaceutical (and other) research studies, as highlighted in the Atlantic Monthly article that Peter mentioned in his post. So if you want to teach people to become better filterers, they are going to need the following:
-access to the broad base of scientific literature and the know-how to perform a systematic, comprehensive search for the relevant evidence
-expert knowledge of the scientific method and randomized controlled trials
-the ability to critically analyze the literature and draw appropriate conclusions across relevant studies
If we really wanted to empower consumers, we’d also need to give them the source data for all the studies, so that they could perform the analyses on their own.
This is a tall order, so my feeling is that a two-pronged approach is the way to go. Regulate the clearly biased derivative information, and inform the consumers. I feel the same way about tasers. Would society be better if taser companies showed us ads for different personal defense tools based on some personal information (e.g., wording in emails about “feeling unsafe”?) What if they reminded us of the danger outside our door, which may or may not exist, much like they do with health issues? I think it’s an open question, but I think we can all imagine more tasers would be purchased, and more accidental deaths/accidents would occur as a result. I believe that’s what DTC pharma advertising is doing right now.
I completely respect your view that this is a matter of personal responsibility. I just don’t think it’s only a matter of personal responsibility – it’s also a matter of social responsibility. I think patients should feel empowered to demand that biased, potentially misleading health information isn’t fed to them constantly.
I really can see how my statements might seem like they are somehow patronizing of patients, as though they don’t have the wherewithal to make their own decisions. That’s just not where this is coming from; I feel very empowered, critical and aware, and I still see myself affected by advertisements in ways I’m only aware of after the fact. I can also see how my recommendations to quell DTC advertising seem like an infringement of commercial free speech. That may or may not be true. I don’t know enough about “commercial” free speech. What I do know is that if you’re making a profit with misleading information, that’s less a “free speech” issue and more an issue of fraud.
Thank you for such a rich dialogue and for the opportunity to share my thoughts and opinions. I will bow out now unless you would like to continue the discussion. I know I’ve said more than enough!
Sincerely,
Jillian
Great reply, Jillian. We seem to overlap in our thinking – I suspect our Society (and blog) are pulling for the remedies for the issues you cite.
A lot of what we do here is educate e-patients about things we think an empowered, engaged patient needs to understand.
Hm – I wonder if you (individually or CDD) would like to submit a piece for consideration in the journal. I have no influence there – they have the standard “firewall” that protects the editors from opinionated people like me – but if you’d like to, let me know.
I can’t speak for the editors but it seems entirely valid for the journal to explore the gray (and shifting) boundaries of responsibility and capability between the parties in the medical ecosystem. Those shifts are the essence of the change to participatory medicine.
A related development: the Google Chrome browser now offers a plug-in to let you opt out of personalized ads based on cookies. https://chrome.google.com/webstore/detail/hhnjdplhmcnkiecampfdgfjilccfpfoe#
Not a perfect or full solution – just a related development.