At the Connected Health conference in Boston last year, where I spoke with my physician Danny Sands, I heard the visionary Clay Shirky speak. He gets it in spades about patient empowerment. In passing, he cited one of the most absurd ideas I’ve ever heard :–) … a company called Medical Justice wants to help doctors avoid consumer ratings, by getting patients to sign an agreement saying all their conversations are the doctor’s property, trade secrets, so the patient isn’t allowed to tell anyone what the doctor said.
How disempowering is that?
And absurd, because as Shirky pointed out, even if the patient signed such a contract, the spouse could spout.
But it appears the idea hasn’t died: today Lindsey Tanner writes in the Associated Press Docs seek gag orders to stop patients’ reviews. I don’t know if they’ve changed their strategy – this piece doesn’t mention trade secrets, it says the company will simply force ratings sites to remove those ratings.
Good luck with that, because (among other things) patients can just go to sites like RateMDs.com where ratings are anonymous. From the article:
John Swapceinski, co-founder of RateMDs.com, said that in recent months, six doctors have asked him to remove negative online comments based on patients’ signed waivers. He has refused.
“They’re basically forcing the patients to choose between health care and their First Amendment rights, and I really find that repulsive,” Swapceinski said.
He said he’s planning to post a “Wall of Shame” listing names of doctors who use patient waivers.
Personally I’m not thrilled about the inevitable advent of doctor ratings. Anyone who reads book reviews on Amazon or has used Angie’s List knows there are a lot of “U R dum” commenters. I’m sure the doctors I highly respect will get insults from some idiots. Bad ratings aren’t certain, nor are good ratings: I’ve had two consecutive experiences where a highly rated vendor on Angie’s List (non-medical) turned out to be horrid; I have no idea how they got good ratings.
But the truth (in my view) is that as empowered patients in this new world, we’ll need to learn to interpret ratings from others, and eventually things will improve. And in any case, at least we’ll have more information than we have now as we make our choices.
Meanwhile, as I said, good luck to Medical Justice. They strike me as an almost comical attempt to hold back the tide.
Dave,
I am not at all a fan of the current Rate-A-Doc sites because they don’t systematically rate the elements that make an MD a good one. But that is besides the point!
What is most disheartening when reading the article is to find, one more time, the proof that many doctors believe they should be treated differently from the rest of the universe.
Just imagine you would read a story where a manufacturer of consumer electronic products was explaining it is actively working to make sure buyers of their products cannot post public opinions & comments about what they bought!
In 2009, anyone will say that company is going straight to bankruptcy court without collecting the $200.
Why we still tolerate this mindset with any doctor amazes me.
ps: Laura Landro’s great piece in today’s WSJ, “Finding a Way to Ask Doctors Tough Questions“, directly relates to this awful mindset.
I hope that fostering the concepts of participatory medicine & citizen medicine will accelerate the necessary changes that must first take place in the medical schools.
Yeah, can anyone say…free speech? What about other people’s reputations? Are doctors special? Are they any more vulnerable than anyone else from being talked about online? Good luck, fat chance.
Dave,
While discouraging, the Medical Justice controversy is illuminating because it exposes physicians’ underlying assumptions about their work. The medical system as currently constituted is simply ripe for abuse. Whatever goes on in a doctor’s office is private, meaning the physician controls time, setting, communication protocols, etc. This would all be well and fine except if ever physician really were Dr. Kildare and the hc system overall was not broken. Usually the “reputation” of a physician overrides that of the patient, so whose word should one trust? Who would dare speak up about medical malfeasance, or simply disrespect — towards women, minorities, anyone the physician does not regard as his or her peer.
I say this because there are two famous legal cases now of physician sexual assault of patients where I live. Once one or two women spoke up, the dam broke. Guess how many total? A friend was invited to town to run a communication service for the medical society. The head of the society, with congressional ties, simply decided to take his portion of the business once it became successful, with a “sue me” attitude. My friend technically won in court, but lost overall in the manner of the justice system.
A new specialist in town waits to see if the practice she joined — linked to the practice of the wealthy, arrogant radiologist who refused to put a second opinion on an iffy mammogram in writing — will make good on its contract, and if it will discriminate against her in subtle ways. The senior heart surgeon makes sexist jokes in the operating room — like ha ha.
Rapacious in business practice? This doesn’t occur to the general public, but the inside scoop on how physicians do business locally would make any patient think twice about raising the issue of malpractice, or simply bad manners. I kid you not.
This said, going negative has a lot of drawbacks — one of them being that they will refuse service, particularly if the patient lacks financial or social resources. The docs I saw at the public clinic were simply crushing their patients. I won’t go into details about the pelvic exam but ….you get the picture. Despite their federal and state contracts, the attitude toward the patient is you are lucky to be getting health care, so you have no rights.
I think the proper uses of Yelp! etc. are to get the word out about the GOOD DOCTORS. What the Medical Justice folks seem to object to is not what they are saying — that patients are evaluating physicians’ medical decisions in areas in which they no expertise — but rather that patients are correctly pinning the tail on the donkey: reporting arrogance, insensitivity, and disrespect which raise serious issues about diagnostic and other skills. The first orthopedic doc to misdiagnose my daughter did so in a 3 minute visit after a 2 hour wait at the county hospital. He did not fully listen to her when she tried to tell him it hurt . . . This “attitude” which also had diagnostic implications very nearly killed her.
Positive Yelp!ing in a small community condemns by silence.
Mme. Defarge
Re: the “awful mindset” to which Gilles refers…
One consequence of our current medical culture is that it makes patients question the competence of good physicians, the ones who are not arrogant and not so profit-minded.
Twisted, eh?
My GP is truly excellent, diagnostically, in attitude, time management, use of IT, etc. She is not prominent or powerful in the manner of the men who run the local hospitals and elite specialty practices – meaning wealthy — but the word is out, and people are quietly flocking to her practice. The wait to see her is long, but I generally run into friends in the waiting room. She is, after all, worth the wait.
With the orthopedic specialist who misdiagnosed Sophia, I would not have minded the wait if he had not almost killed her, then expressed no awareness or remorse in subsequent visits.
What these evaluation websites seem to do is record patient impressions of physician attitude. I have seen good arrogant (a surgeon who is confident in his skills) and bad arrogant. What the docs connected to Medical Justice are probably panicking about is patient intuition about the connection Bad Arrogant/Bad Medical Practice, if you catch my drift.
If physicians are in short “supply,” they get by with a lot.
Someone should make a list of doctors who want to require your silence. It is the sort of thing one should know before going to see a doctor. And I bet that a doctor insisting on such a requirement in an emergency room would be violating some law or regulation.
BTW, in this situation the first amendment applies only in spirit but not in a legal sense. The first amendment only applies to curbs on free speech by the government (and some say only by the federal government).
Hi everyone,
I’ll play my role of providing context with data. The Pew Internet Project’s most recent survey report on health is The Engaged E-patient Population (http://www.pewinternet.org/PPF/r/259/report_display.asp)
Essentially, 74% of adults in the U.S. go online and, of those, 80% look for health information online.
Here’s a quote pertaining to the validity of online info, which goes toward a health professional’s possible fear that patients will judge them based on a single online source:
“On the health front, there is a generalized fear of misinformation, but the Pew Internet Project has evidence that people are being smart about the internet’s place in their lives. A December 2007 study found that medical professionals were the dominant source for people with urgent health questions, which is not what we see in any of the other topics included in the survey: education, taxes, Medicare/Medicaid, changing job status or Social Security. For those issues, the internet or a government agency played much more important roles than did professionals. The same study provided another data point about the place of the internet in Americans’ lives: people who had encountered significant problems in the previous year were likely to report using not just one, but two to three different sources of information to help them solve their problems.”
Here is a link to a previous report:
Online Health Search 2006
http://www.pewinternet.org/PPF/r/190/report_display.asp
In that study we found that 29% of internet users had looked online for information about a particular doctor or hospital. Our December 2008 survey, which won’t be released until April, asked a more targeted question, separating searches for doctors/health professionals and hospitals/facilities. The percentage of internet users who had looked for info about a doctor is now significantly higher.
Related reading:
Doctors’ Digital Footprints: Is it “disordered” behavior to Google your doctor? An article in JAMA suggests that doctors be on their guard.
http://pmedicine.org/epatients/archives/2008/08/doctors-digital-footprints.html
Having almost universal access to the internet, it seems perfectly normal to apply the “trust but verify” rule to professionals who hold our lives in their hands.
ACOR members constantly ask about experts. We have happily taken 10s of thousands of cancer patients away from the hands of mediocre doctors who should have recused themselves, because of their understandable lack of knowledge about the medical condition they diagnosed, often with long delays. And then we have helped these same patients find the real healing hands, the doctors who treat many patients with the same condition and have optimized their practice to provide high-quality across the continuum of care. The idea we should stop because we may jeopardize some of the income of an individual is so ridiculous, it almost makes me cry.
We are following the recommendations of the IOM, published in the groundbreaking “Crossing the Quality Chasm: A New Health System for the 21st Century”. It is high time for all doctors in the US to do the same. After all, the report is only 8 years old!
Gilles’ comment is so good it should be an independent post. Then it should be recirculated back through the ACOR lists to encourage patients and caregivers that they, in the midst of trauma, are on the right track.
Because sarcoma is so rare, for instance, we, like other mailing lists on ACOR, have inadvertently moved to the cutting edge of medicine. And I mean inadvertently. No one starts out his or her life as a patient advocate thinking he or she has to acquire near-expertise in medicine — including the business end, like billing codes — in order to survive.
This alone says a lot about the state of health care in the United States. I keep thinking, “Why am I doing this?” and then I realize if I don’t, I might die. Or my daughter might die.
Regarding my question from last August: Is it “disordered” to Google your doctor? Please see the following quote from an ABCNews.com story about Medical Justice:
“It’s a good thing for patients to have access to but you’ve got to watch out,” said Panetta, an attorney in Boston, Mass., who is also actively involved in diabetes patient advocacy. “The people that are more likely to use it are going to be people who have an axe to grind, and it may be because they’re crazy.”
And check out our own e-Patient Dave’s kicker quote:
Blogger deBronkart knows exactly what he would do if his doctor confronted him with a waiver asking him not to post comments about him online.
“I would decline,” he said. “But I would look him right in the eye and say, ‘You don’t need to worry about me shafting you.'”
Here’s a comment I just tried to enter on the ABCNews.com article that Susannah just cited. (It didn’t take, or isn’t showing yet.)
—
Thanks for mentioning me. There’s a terrific discussion about this on the e-Patients blog. This is a pretty deep subject, and some smart people have been studying how much useful information e-patients can contribute. Ratings are just one example.
When I was diagnosed as almost dead two years ago, it was a *patient community*, no web site, that told me where to find the best specialist for my desperate condition. Today that community continues to meet new members who never got told that.
There’s a new movement forming, toward Participatory Medicine, in which empowered patients are actively engaged in managing their care, in *partnership* with professionals.
It doesn’t come through in the story, but one thing I said during the interview is that I’d never get anywhere NEAR a doctor who didn’t give me a solid feeling of trust.
Years ago I was severely shafted by one arrogant physician and almost shafted by another – I learned my lesson and today if I get the slightest hint of “I’m god – who has the medical degree here??” I walk immediately. I am an empowered patient, and those days are over. :)
“e-Patient Dave” deBronkart, Nashua NH
e-patient blog: http://pmedicine.org/epatients
Personal blog: http://patientdave.blogspot.com
Dave,
the movement is not new! The organization of a legal entity is. Over the last 15 years, primarily because of the advent of the internet, a very significant number of American patients & their caregivers have organized Ad hoc, creating countless social networks with a clear focus.
These pioneers have been doing, because of the absolute necessity to become informed, exactly what we are now advocating publicly. Many, many micro-silos were created between 1995 and 2005. Amazingly most of the groups created all reinvented the wheel and came up with similar solutions to the problems they faced.
During the same period the IOM wrote the amazing report that should be our driving force. All the recommendations made then apply equally today since so little has changed! We must not forget that many great minds have been trying for years to do what we are embarking on now. I hope we will embrace all their work and work very hard to avoid becoming our own silo.
Correction accepted, Gilles. You’re right – as I well know, this has been going on for years; that’s what’s documented in the white paper. (And new visitors to our site who haven’t seen the white paper should CERTAINLY look at it; it’s at the top right of this site.)
Truthfully, when I wrote “new movement” I had the mindset of talking to someone who, like me 14 months ago, had no idea this was going on.
Or, more accurately I DID know it was going on, because I was doing it myself. I just didn’t realize it was being studied by the people here, and didn’t know the term “e-patient,” much less “participatory medicine.” That’s why when I read the white paper it blew my mind.
Anyway, yeah, what you said. You’re right.
New Territory
We are in a strange In-Between Land. Anthropologists would say “liminal,” betwixt and between social statuses.
Like Dave said, two years ago the E-World he presently inhabits would have been a different entirely unimaginable. Now, it’s home.
I start to take ACOR and the e-patients site for granted, and then I describe what we do online to a very savvy person who deals with health issues offline, in the Real World, and they look at me like Whaaat?!
Last week I described how an ACOR list works — pretty good crowdsourcing almost 24/7 — to a health care advocate, and she said,” Why aren’t you on Oprah?” as if it were a revelation. How long have these resources existed?
Many/most doctors’ attitudes towards e-communities are still way behind the times, in part because physicians are used to people adapting to them, in part because of the culture: they are too overworked to innovate unless there is guaranteed profit.
So how do we bridge e-Land and non-e-Land? I am so used to being online and solving medical issues online — I just did it a minute ago through UCSF, avoiding a two hundred mile drive, lost work time, etc. through something that could be resolved electronically — I barely know how to talk to Zombie People. Or are we the Zombie People?
Dave,
I fell in the same trap! I remember when seeing Tom Ferguson for the first time in 1996, at the computer museum in Boston. I couldn’t imagine anybody had been thinking about patient empowerment for more than a few months :-)
But Tom has been living it for many years already and there was a core group of true pioneers at Harvard, under the direction of Warner Slack for MANY years. Warner was/is truly a visonary. Creating and Running the Center for Clinical Computing, he decided a long while back that granting medline access to the medical student, through a centralized system in the hospital would be beneficial. I cannot never forget one of his many anecdotes: Use of the system was almost nil, until he decided to charge real money per page of downloaded abstract. Then suddenly usage shot significantly up, because the students were suddenly convinced that the information was valuable.
Christine,
Well YEAH, why AREN’T you on Oprah???
Who knows her people?? Why ISN’T this on the tip of everyone’s tongue? Let’s get busy!
Well said.
Man, the opinions in the comments about this on ABCNews.com are WARM.
Whew. The citizenry seems to be of one mind on this.
Slashdot has picked up the story but links over to the Arstechnica version of it.
I think this is a difficult issue that will not be resolved easily or quickly. Most doctor rating sites have significant issues in terms of their statistical data models, which directly affects the reliability of the ratings they publish. This is actually true of virtually all online rating sites, but we don’t mind it as much when it comes to an appliance or TV because it’s not the end of the world if we make a wrong decision based upon faulty data extrapolation. (You can read more about the data problems here.
However, when we start making decisions based upon the same faulty data models that may directly affect someone else’s healthcare, well, that’s a little scary. I don’t think anyone has the right to take away our rights to free speech (and review whatever we feel like), but at the same time I don’t think the existing doctor rating sites are doing anyone much good (outside of perhaps noting the worst of the worse).
And of course, calling someone “crazy” just because they’d like to express their opinion online is, in itself, a little bit disconnected from the online social world.
There is a distinction between freedom of speech and a supposedly reliable physician rating system.
A smart person would no more trust a commercial or semi-commercial physician rating site than they would trust the Better Business Bureau to go after the pool guy who disappeared with your money or a student evaluation of a professor. (One student at University of Chicago, gone wild on the evaluation form, criticized Milton Freedman for his ties. I used to wonder if it was my duty to shoot him for his work in Chile when I passed him in the hallway.)
No smart consumer would trust a U SUCK comment. On the other hand, any smart consumer would beware of a physician who forced a patient to sign a silence clause.
Any site that professes to rate physicians accurately reminds me of the tv ad for 1-800-DENTIST which helps you find a nice dentist. Or the U.S. News & World Reports rating of pediatric hospitals.
On the other hand, Milton Friedman would probably have me shot for spelling his name wrong. Or dating one of his grad students (relationship was short lived)
and . . . there is the problem of the Digital Divide. The folks who are least likely to use the physician rating sites — the folks I saw in the public clinic, waiting stoically for part-time physicians who could care less — probably experience the worst of the medical system. Yet they are not even registering in this discussion.
I love all the anecdotes about stupid ratings, especially Chris Gray’s Milton Friedman item. PERFECT.
This IS personal. Like, my daughter’s a first year high school science teacher, and high school students (no brighter than the general public) go on teacher ratings sites. And I’m sure some of them say really immature and stupid things.
Then, consider: as I said, a small number of ratings (good or bad) would be pretty useless. But if one merchant on eBay has 98% positive ratings and another one only has 70%, and they both have a hundred ratings, that’d definitely influence my decision.
But regardless, as Gilles pointed out, we didn’t start out talking about accuracy of ratings. We’re talking about, is it right (and is it even USEFUL) to try to block them?
In fact some of us even invite it. Last month on my own blog when I called for a Patients’ Speakers Bureau, I commented:
“I also suggest that we ought to set things up so we can get rated, just as many folks want to rate doctors. Plus, I know from career work that speaker ratings help speakers improve.”
Mmmm, thanks to @DocJohnG for the link to the Slashdot thread. It’s full of flames, as usual, but also has a deliciously articulate brief comment by a doctor. Well worth a click.
We should re-examine our assumptions.
We are talking about apples and oranges. John’s “statistical data model” and the sites to which he (and this controversy) refers are not the dynamic information and support communities to which Dave and Gilles refer (i.e. ACOR lists).
ACOR is a virtual 24/7 live action model of open sourcing or “crowd sourcing” a problem. Members’ knowledge builds exponentially, is archived, refreshed, repeated and constantly built upon. As information sources (not a rating source per se), these list have come to include top docs or top “niche” experts to whom we have near instant access via the Internet, with whom we have built up relationships of trust over the years.
It took about ten weeks from the first “whoops!” surgery to final diagnosis and treatment plan on my daughter’s case in 2003. I stopped thinking I was crazy when someone on the LIST informed me that sarcomas were often misdiagnosed, that the flipping of diagnoses from benign to malignant to some other cancer or maybe not was a common scenario. This was something the ped. oncologists could not do for fear of not sounding authoritative.
For newbies, we are now down to about 2 hours to find the right facility/doc, often with direct contacts with the social workers or the onco. nurses or the docs themselves. This is virtually unimaginable to Civilians. When the troops get tired, or someone dies, the knowledge gets carried on by a new wave of advocates.
As Dave and Gilles point out, this is not a statistical model nor is it an evaluative or ratings system (although we get beyond the chaff pretty quickly without mentioning names) nor is it “consulting online sources” like WebMD or PubMEd to get information. It is unique: participatory medicine. Believe me, it is VERY HARD to describe to people who are fighting their way through a cancer diagnosis without an e-community. Sitting by the phone, awaiting a phone call from the doctor’s office about how to proceed.
The best analogy would be the Verizon network cell phone ad (the guy stuck in the swamp with the Mafia, who looks outgunned until his network appears) or a floating craps game.
Evaluation of a physician is only a small part of the process. It is not perfect knowledge, it is human knowledge. We disagree, clarify, compare notes, check sources, add new sources. We also hook doctors up with new sources, sites and information.
So, to sum up, through open sourcing, e-communities, evaluating physicians and outcomes in real time, on an ad hoc basis, we are demystifying medicine.
For the record, the Consumer Healthcare Blog picked up the ABC story.
I wrote about it at ParticipatoryMedicine.com:
Trust but Verify! Groups of Patients acting as Citizen Reputation Systems. Thanks Chris for the wonderful comments!
ABC’s Good Morning America Weekend had a brief piece Sunday March 8, with video of Angie Hicks (Angie’s List), the Medical Justice guy, a customer of his, and a mom who used Angie’s List to find a doc.
Over on the Trusted.MD blog, author Hippocrates writes that he thinks the whole thing is just scamming doctors.
The Hipster cites an MSNBC poll that reaches a new nadir of unscientificness – we could use this as a quiz question for rookie survey design students:
Again, that’s a model of an unscientific survey. But as I said, the whole idea looks like a comical attempt to hold back the tide. Why bother?
In the report that the White House published today (I am in the early process to summarize the findings) I was struck by the following paragraph:
“In addition to quality reporting, Health Care Community Discussions also recommended cost reporting. At a Colorado Discussion, participants stated, “[P]ublic policy can create a data base to compare providers and their costs for basic services. In this database can be a listing of their filed complaints or some type of review (maybe similar to the Better Business Bureau) where consumers can know if they are seeing a quality provider or not (rather than relying on the insurance company to tell them who they get the best rates from). Providers would ultimately benefit because patients would migrate to those more efficient/better outcome providers.”
Good luck to Medical Justice, as Dave wrote earlier!
Probably better to walk out before the doctor throws you out.
Doctors have every right to defend themselves. The only people the webmasters want on there are doctor haters/bashers
Dear all,
I am not from the US, and flew all the way to a famewhore ENT Plastic Surgeon in Beverly Hills.They also gave me a pack of agreements to sign, which I could nt understant and his patient consultant care did not explain to me and she told me to hurry up and the papers are not so important. Now after the disappointment of the surgery and after being ripped off and after being exposed to malpractices I cannot inform other prospective patients to be aware?! They are not allowing me to share my experiences online…Going the the US (Beverly Hills) was the biggest mistake in my life. It is a fraud. Due to these agreements which I feel they are unfair I do not recommend anyone outside the US to fly for plastic surgery in the US. Be aware! and for those who have well establish plastic surgeons mainly Europe, think about it twice. They have these agreements which infringe upon your rights of speach. Furthermore, doctors can post good reviews online themselves and you would only see the good ones-as I did.
Checking in here a bit late, but…
It’s not clear that gag orders such as this could stand up in court; as anybody who watches People’s Court knows, for a contract to have validity there has to be consideration for both parties, and unless the doctor is paying for the patient’s silence (which would be something to report!), the patient is just doing the doctor a favor, and changing your mind about doing a favor is not prosecutable by law.
Of course, as is said over and over, the antidote to bad speech is good speech; yes, current online doctor reviews are worse than useless, but they won’t go away. If anybody is interested in doing somemthing about the problem, instituting serious commentary by the majority of patients would go a lot further than playing whack-a-moron with the crazies.
A doctor is now suing NYC to try to track down a person who made an anonymous negative/slanderous doctor review on http://www.vitals.com. Here is the article:
http://www.mondaq.com/unitedstates/x/147428/Appellate/CostBenefit+Analysis+Adopted+By+The+New+York+Supreme+Court+For+Determining+When+A+Nonparty+Must+Undertake+The+Burden+And+Expense+Of+Recovering+Deleted+ESI
This practice is still happening, and reputation services are getting smarter and they are spoofing local IP addresses in a effort to make it harder to detect fake reviews.
Hi Matt – I can’t say I’m shocked to hear that… do you have a link?
I run CareDash and we have seen this behavior in spades. We had to develop algorithms to filter it out. Hurts our review count relative to others but part of a commitment to actually helping patients find the right providers…