Dear Santa,
Could I please have some informed consent for Christmas? It would be so lovely to have doctors tell women the truth about pap tests! It would be so nice if doctors told women that: “cervical cancer is rare”, or if they would say: “yes, of course you can have birth control pills without a pap test”! Or: “oh well the pap test is really unreliable anyway”. Or maybe: “of course you don’t have to have a pap test if you don’t want one . . . it is your body and your choice”! Or maybe: “I have to tell you that I make more money when you agree to a pap test”. It would be wonderful to have a little truth and a little informed consent.
That’s all I want for Christmas this year. Thank you Santa!
Informed consent missing: http://www.kevinmd.com/blog/2009/11/informed-consent-missing-pap-smears-cervical-cancer-screening.html
Why doctor does not have pap tests: http://www.goodreads.com/author_blog_posts/2234123-why-i-don-t-have-smears
forwomenseyesonly 
What I really want for Christmas — my data to be erased from Ontario government health registries that records all Pap tests, mammograms, FOBT and colonoscopies. The government actually passed legislation in 2004 that allows the health ministry to collect my data without consent and I am never allowed to have it deleted. Health care providers can look me up on the databases but I am only allowed to see my information by filling out a form, presenting identification and a notarized document. Irony the act passed in called the Health Privacy Protection Act (sorry, something like that if I can edit later) .
My doctor could also put a note on my file that we had the discussion about me not having paps and informed consent so we do not have to do that at almost every visit. If I am coming in, I am sick. He needs to concentrate on that. However he cannot seems to put a note in his computer to pronounce my name properly either so I know he does not care about me, just money.
Moo, those are my wishes also!
I would really like to to be able to unregister from Australian Medicare, delete all my details from their database, prevent my information from ever going into eHealth records, be able to seize my medical file from my doctor’s practice, and have a recognised legal right to see doctors totally anonymously — in this case they can’t possible chase me for some pap-crap, mammograms or other “screening” if I came to see a doctor for a sore throat: no name, no phone number, no address!
After that they can indeed call it an act of Personal Health Information Protection. Until then, it is a totalitarian medical surveillance. 🙂
Sorry it is called Personal Health Information Protection Act 2004 .
There is no Privacy in that at all.
In Australia they’ve introduced ehealth records but it’s been a failure with a very low uptake. Now they are thinking of an opt out approach instead of an opt in. Doctors haven’t been keen because they weren’t getting paid to upload files (they won’t lift a finger unless there’s an incentive as usual) and they also don’t like the fact that patients had control over what was put on their record. I read there was a bit of an argument between doctors and those who were implementing the system with them telling doctors to stop being so paternalistic by not letting have patients have a say about what goes in their file. They told doctors that those days are over.
Mary, do you know where one can opt out if they do proceed with this approach?
I would be first one to opt out!
PCEHR (patient controlled e-health record) initially sounded like a good idea, but after a good research of the system internals, I concluded that I wouldn’t want any of my personal information recorded in this system:
– First, It doesn’t offer that much control to the patient.
– Second, all control can be overridden in case of “emergency”.
– Third, the “control” part is offered to the patients at the set-up stage, to convince more people to sign up. After most people are in (luckily that hasn’t happened yet), the patient control can be significantly decreased.
I wouldn’t want my private information to be sitting out there, open for world-wide access, misuse and hacking (yes, they do outsource some services overseas!). You never know when and how all this information can be used against us: to chase us, to harass, or to coerce us into some other harmful screening, for example.
In an ideal world, I would prefer to be the keeper of all my medical records. And if a doctor needs some info, they should ask me. Not all the way around, when a patient has to beg and pay to get their own medical information.
If the government really wanted patients to have control over their health information, they would have given us the option to see doctors anonymously, the power to remove our medical records from any medical practice, and the right to access any our medical files whenever we want to. (Yes, it may be inconvenient for the medical system. Yes, some people may remove vital information. But it is their health, and their choice.) But instead, the government are trying to push PCEHR, where the patient control can be removed in an instant, whenever the system pleases.
Also, keep in mind that nothing ever gets deleted from these systems. Information only gets marked as “deleted”, but it is kept indefinitely, and can always be retrieved without our control or knowledge.
Sue,
I certainly wish that there was informed consent for pap smears. I wish there were pamphlets in every doctor’s office about pros and cons for pap smears. I think every woman (even if she is at risk) should decide about whether to have pap smears.
I am in the process of writing another article about pap smears that address informed consent and risk factors. I was wondering if you or anyone else here knows much about the HPV Urine test (http://www.trovagene.com/Products-Services/Clinical-Testing-Services/HPV-Urine.aspx). Does anyone here know if this test has been offered at any doctors’ offices yet? It certainly would be nice for women to be able to have this test since they can urinate in a cup privately.
Misty
Misty, I’m happy you are writing an article about informed consent for pap smears! I unfortunately do not know about the HPV urine test, other than the fact that it exists. It does seem that the self tests are never offered to women in the U.S. or in Canada. The self-lavage system is offered in some parts of the world though, I believe Singapore and Amsterdam offer it to women: http://www.delphi-bioscience.com/SiteCollectionDocuments/Media%20Release_March%2026,%202012.pdf
Sue,
I spoke to a man at Trovagene (http://www.trovagene.com/Products-Services/Clinical-Testing-Services/HPV-Urine.aspx). I found out that women cannot buy the HPV Urine test themselves. He said that doctors had to order them and that a woman had to consult her doctor in order to get the HPV urine test. He said only 4 doctors had used those tests so far. He said it was against the law for them to allow women to purchase the tests by themselves. He said they are talking to FDA and hoping that they can get the test approved by FDA. He said he understood my concerns that many women feel pap smears are invasive.
It is frustrating about how many doctors are not very open to women having less invasive tests.
Misty
I asked my midwife about the urine hpv test a few days ago. She said: “I’ll look into it and if it’s reliable, I’ll make it available.” My midwife only does self-tests and urine STI tests. She allows her clients to refuse all tests (she has never brought up paps after I refused to do one in my pregnancy). I see her in February, so I’ll ask her again then.
The Delphi Screener is now available in quite a few countries and it can often be mailed to you as well. You’d have to check with the company, Delphi Bioscience in the Netherlands or Singapore. Tampap is available in the UK, it was blocked here, locked behind doctors who get target payments for pap testing. I wouldn’t wait for Australia to offer self-testing, if you’re interested, contact the company. Cheap airfares can be utilized, a colleague used the Screener in Singapore. Australan women can order the Screener from Singapore and mail back their sample.
I understand an Australian distributor was being sorted out, but if Papacreen and others hear about it….the red tape will block it forever. Of course, women would be told they still need pap tests even if they’re HPV-
So why would you bother using the Screener? That bit of misinformation would be enough to see many women lose interest in HPV self-testing. (and paying for it)
Tampap was marketed in the UK that way, regardless of the result you still need pap tests. Rubbish.
“Cheap airfares can be utilized” I can see or sort of comprehend why someone would want to know, after decades of brainwashing, but it is still so absurd. We have as much a chance to get throat cancer, and I bet no-one even ever thinks of it, let alone fly to Singapore.
I agree, if we’re going to worry about something, at least make it a common cancer or serious theat…but sadly, for many women after decades of brainwashing, they fear not testing. Even my highly intelligent friend was only confident to scrap pap testing after she’d used the Screener and after doing some research into the significance of HPV. So often HPV testing is marketed as something you do as well as pap testing so she wanted to be sure it was safe to rely on her HPV- status. After reading about the new Dutch program she was happy and confident enough to correct her Australian GP who still claimed she needed pap tests, “because HPV can come back”. She’s no longer sexually active but if she takes a new partner she might use the Screener again. She admits it’s a lot of fuss over a tiny risk, but felt if she ignored testing and developed cc, she might regret her decision.
I’ve found many women can’t place the risk of cc into perspective, but then…when was the last time your GP mentioned throat cancer, or the surgery phoned you to enquire when you last had an oral exam? Exactly, we’ve been trained to greatly fear a tiny risk and doctors have been incentivized to worry the most about cc.
So I think some women can only dismiss the pressure and scare campaigns with the reassurance of a HPV- test result. My colleague felt the worry would get to her sooner or later as an overdue woman. Her GP reminded her regularly that 90% of women who get cc are unscreened or overdue. (it’s not 90%)
I travel to Singapore for work a couple of times a year, but won’t be testing.
I have always understood the risk, so the brainwashing didn’t affect me, like water running off a ducks back.
Strange but the fear lurks into your mind. Not testing for years might have many reasons: disagree with agressive treatments pushed or colposcopies for minor results such as ASCUS without any HPV co-testing. Or just a perverted male doctor.
On the point of the perverted male – keeps pushing because of incentive payments. It should be that he has to provide a women with a list of female practioners such as practical nurses in the area where women can get paps as an alternative. I can’t see the government screening programmes do not know that is why some women will never pap or get HPV tested. I have thought about it but if I “see” another doctor, because I am rostered with perverted male, he has a fit. I got a flu shot somewhere else because he was on vacation for two weeks last year, he had a fit because he lost that “incentive” to another clinic. Plus HPV tests are not allowed alone or covered by Ontario government insurance. Flying to Singapore is not an option.
Looking at your own cervix with vinegar is an option for some women. They resort to stealing disposable speculum from walk-in clinics where they are left sitting in consult rooms. There are only the large size ones keep in the drawers. The regular size speculums, I have been told, are often ordered in bulk boxes (yuck, not individually packages so easily contaminated) and kept in a back room or closet just because people steal them. Some people also steal the little rechargeable flashlight that goes into the end of the speculum just for fun (or maybe malice) .
I was talking with someone yesterday who has declined cancer screening and her Dr’s office called to inform her that she is overdue for several tests. What’s interesting is all the tests they listed are the ones that Dr’s get incentive payments for. It really isn’t about health care.
“Overdue”- as if it’s owed, right? Isn’t it interesting how they deliberately use wording that depicts things a certain way, which is not accurate at all, but somehow they’re always innocent? They impose these things on someone, but “they’re not trying to hurt anyone.” They deliberately lie, but “they’re not trying to deceive someone.” This is what’s certified, but somehow the fact of them passing some kind of certification testing is a reassurance?
I wonder if there’s any movements to discontinue their getting incentive payments? They dispute it or “try to defend themselves” in any way, that just tightens the noose even more. What are they going to say? That it’s NOT a conflict of influence? That it DOESN’T erode quality of care? Maybe a general “Anti-Medical Abuse” type of thing? That can very well include sexual attacks & if it’s that AND all kinds of other stuff, it might gain some more ground (since it doesn’t have a complete focus on things that are a bit hard to look at dead-on & not everything goes in a strange direction, anyway).
I suppose it would have to be done in a way where they are not left to make any decisions on whether or not this is the case. They’d also have to be outside of the implementation process, too. I’m a huge fan of the “Everyone’s Armed, Everyone’s Honest” style of thought (excluding the doctors, of course)- maybe if women where armed when they brought their kids to someone medical? I’d think a “license to kill” would have to go with that so it’s not a cancelled advantage.
I want a cheap at home HPV urine test.
I did make up a poster that had the cancer screening payments on it and the targets. Then I put about how many millions of tax payers dollars are being paid to doctors who already get paid to do the tests. They even get paid to ask if people want the tests. I also put that money should be used for cancer patients and sick people not for doctors. I put contact the ministry of health or your member of provincial parliament . “Stop incentive payments for cancer screening”. I put the poster up by my apartment elevator but someone ripped it down.
I know some people actually want cancer screening and that is fine. They can do that. They also seem to think that everyone should do cancer screening because it “saves the public system money” . Really? Is there proof of that.? I should think that me not running to the doctor all the time saves the system money since I mostly self treat, use herbs etc. I just cannot seem to get hardly basic medical care without more than half of my consult time spent arguing about cancer screening tests with my doctor. Hardly saves any money in my opinion, rather it wastes money.
I am thinking of making some more attractive folded pamphlet mimicing the official government ones “when it’s time to screen” and actually tell the truth. I would like to leave them around public places. It just feels so subversive though.
By “subversive” I figure you mean that it’s manipulative like they are? I guess it’s more subtle than manipulative. You’re presenting information that counters false information being distributed.
If nothing else it allows a more informed decision. It’s really not very likely that they’re going to hear these things from the doctor. This is true whether the medical personnel is male or female (the women might actually be worse becuase they’d understand how a woman thinks & are possibly more trusted because of their gender being the same). In truth a lot of times when something abusive along these lines is directed at someone it gets seen as innocent for no reason). I’ve also noticed that women in the medical professions seem to think other women are “their territory.” Anybody else notice that? It’s like they have self-determination with someone else’s self- if that someone else is female.
I have no whatsoever respect for the institution of gynaecology, on the contrary, so I would cheer anyone who (manages to) subvert it!
Sue,
I just put up an article about pap smears at http://patientmodesty.org/papsmears.aspx. I did a lot of research for this article. I listed three different risk groups for cervical cancer / HPV: zero to very low risk, low risk, and high risk. I believe that even high risk women have the right to refuse pap smears. Every woman should be offered informed consent for pap smears.
The guidelines for both US and Canada are so misguided. They do not even take into consideration that every woman has different risk factors. I hate the “one fits all” approach they use. I knew a woman who had cervical cancer when she was in her 20s so I know cervical cancer does exist.
I would love to hear your feedback. Do you see any typos? You can also email me at http://patientmodesty.org/contact.aspx.
Someone made this suggestion: With respect to Pap tests for birth control, you should cite an FDA or similar reference stating that only blood pressure tests are required.–most women are so indoctrinated that they won’t believe you otherwise.
Do you have any links about how only blood pressure test is really necessary for birth control pills?
Also, do you have some links to cervical cancer guidelines for other countries such as Sweden?
Misty
Misty, your article is excellent and you certainly have done a great deal of research. Some studies though may or may not be legitimate. For instance, the article on use of DES in pregnancy might not prove to be a valid study if reviewed by the Cochrane group, and because many women would not know if their mothers took DES in pregnancy this would of course provide a perfect excuse to push a pap test on those women. It would be very difficult to study how DES use in pregnancy would effect cervical cancer rates in the woman’s offspring – if not impossible.
Unfortunately many studies are funded by pharmaceutical companies and selective reporting of research is also an issue: http://www.cochrane.dk/research/Why%20we%20need%20easy%20access,%20Trials%202011.pdf
If you read the following review by Cochrane: http://www.cochrane.dk/research/General%20health%20checks,%20CD009009.pdf you can see how the evidence is lacking in regards to evidence that supports screening healthy people. All legitimate research studies to establish effectiveness or “life saving” screenings are abandoned or incomplete. The harms of screening are understudied. The conclusion from the review states:
Authors’ conclusions
“General health checks did not reduce morbidity or mortality, neither overall nor for cardiovascular or cancer causes, although the number of new diagnoses was increased. Important harmful outcomes, such as the number of follow-up diagnostic procedures or short term psychological effects, were often not studied or reported and many trials had methodological problems. With the large number of participants and deaths included, the long follow-up periods used, and considering that cardiovascular and cancer mortality were not reduced, general health checks are unlikely to be beneficial”
And healthcare fraud is a global issue: http://www.biomedcentral.com/1472-698X/12/23