For those who like to cast public health as the breeding ground of moralistic puritans, check out this rather erotic clip from PapScreen Victoria, promoting Pap tests.
While I might wish the clip gave viewers some measure of risk (seeing as we are told “you only have to have sex once to risk cervical cancer”, it would be nice to know what are the actual odds of developing cervical cancer as the result of one sexual encounter), it’s hard to argue with the clip’s impact factor.
In the article below, Amy Collie, Media and Communications Advisor from PapScreen Victoria, says that while social media channels bring useful opportunities for public health campaigns, there are also challenges to negotiate.
Open debate about the merits of screening programs is useful, but it’s also important to correct factual errors and misinformation, she says.
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The rise of social media: how do you facilitate open discussion without jeopardising accuracy?
Amy Collie writes:
Earlier this month, PapScreen Victoria (the cervical screening program within Cancer Council Victoria) launched a digital campaign in the form of an online video.
There was no advertising support for the campaign. We didn’t pay for it to appear on TV or cinema screens, get a run on catch-up TV or get aired on the radio. Instead, it relied purely on unpaid PR and social media for exposure.
[youtube]http://www.youtube.com/watch?v=lXrZNmbWkYM[/youtube]
It’s no secret that brands are turning more and more to social media to promote their products and services. It’s a free, quick way to communicate directly with consumers, and often without the complications of lengthy approval processes or branding guidelines.
Cancer Council Victoria is no different, and as a not-for-profit with limited and sometimes non-existent advertising budgets, we actually rely quite heavily on social media. This recent campaign from PapScreen was housed on Cancer Council’s youtube channel and was heavily promoted to our 6,000+ Facebook fans and 3,500 Twitter followers. Without these community-reaching avenues, and with no budget for traditional advertising, the campaign would not have been possible.
Social media clearly has benefits for the consumer as well. They have the opportunity to communicate with organisations directly, and their opinions will be heard. This is perhaps even more relevant when disgruntled customers wish to make a complaint, and wish to make it publicly. Major Australian retailer Target recently felt the repercussions of this after criticisms of their children’s clothing line were posted on their Facebook page.
Of course for all their benefits, social media platforms such as Facebook also bring with them some fresh complications and challenges, particularly since the Advertising Standards Board’s (ASB) ruling that Facebook is an advertising medium. This landmark decision means companies are now fully liable for all the content on their branded Facebook pages, including posts from fans.
Organisations have no choice but to closely moderate comments from the public and remove any that could be considered misleading or deceptive, or that may breach the self-regulatory codes of advertising. If companies fail to do so within a reasonable time, they risk being penalised.
So, where’s the balance between open discussion and removing content that could be deemed inappropriate? It’s a tricky one.
For health organisations such as the Cancer Council, misleading or inaccurate information can potentially have dire consequences, so we’re very conscientious about ensuring any information included on our social media sites, including from members of the public, is correct.
However, we also want people to have the chance to voice their opinions and interact with us and other members of the community.
Cervical screening, like all screening programs, has its challengers. We understand cervical screening should be an informed choice, and that some women may choose not to participate.
We have no problem with anti-cervical screeners posting their opinions on our Facebook page, and we encourage educated debate.
However, while opinion and debate is one thing, misleading information and belief portrayed as fact is quite another.
When comments are posted that are factually inaccurate and misinform women about cervical cancer prevention, we have a responsibility to remove them. If we didn’t, and chose to publish a response instead, there’s the risk that some women won’t have the time or inclination to read everything, and will walk away either misinformed or feeling confused about their health choices.
As an organisation, we aim to provide clear information, including potential harms and benefits, in order for women to consent to – or opt out of – cervical screening in an informed way.
The rise of social media has enabled anyone with access to a computer (or a smartphone or tablet) to join in public discussions and have their say. It’s now up to individual organisations to facilitate this discussion without jeopardising the accuracy and value of their online content.
• Amy Collie is Media & Communications Advisor, PapScreen Victoria
I don’t believe Papscreen or the Cancer Council have ever respected informed consent, we’re told we “must” or “should” screen with very little real information. IMO, some of it is misleading. We don’t see this in prostate screening where men received risk information very quickly and doctors were reminded to obtain informed consent, a double standard is clearly in place.
I doubt Papscreen would want women to know how unlikely it is you’d get cervical cancer after one sexual encounter (or many) or your chance of benefiting from pap testing. I think they rely on our ignorance to achieve the govt-set target, their political objective.
I knew it didn’t sound right 30 years ago when women were routinely being coerced into testing to get the Pill. Isn’t cancer screening always elective, or is it only elective for men? I was shocked when I eventually got to the facts, and this was pre-internet, it meant days in the medical library and speaking to academics. I made an informed decision as a low risk woman not to have pap testing, yet many doctors do not respect our right to say no.
I have never agreed with paying our GPs incentive payments for pap tests, a potential conflict of interest, or with opportunistic screening, which is promoted to GPs by Papscreen. Women have a right to see their GPs without being pressured about pap testing and leaving less time to deal with the reason for their visit. I know many women who now avoid doctors due to this pressure. A rare cancer is the major focus in women’s healthcare, ignoring far more likely risks to our health.
Cervical cancer is actually rare, always was and it was in natural decline before testing even began. 0.65% is the lifetime risk of cc. I had to wait for Dr Angela Raffle to do her research back in 2003 to get a real idea of how unlikely it is that an individual woman would benefit from pap testing, “1000 women need regular screening for 35 years to save ONE woman from cc”. Even worse, the lifetime risk of referral for colposcopy (and usually some sort of biopsy) is a whopping 77% here in Australia, a very high rate because our program has always seriously over-screened women.
We know that 5 yearly and 2 yearly pap testing carry the same very small chance of benefit, but 2 yearly testing has much more risk and produces a lot more false positives. Evidence based programs are found in Finland and the Netherlands, the former have had their 7 pap test program, 5 yearly from 30 to 60, since the 1960s and have the lowest rates of cc in the world and refer far fewer women for colposcopy/biopsy. Over-treatment and excess biopsies can damage the cervix and lead to miscarriages, premature babies, c-sections, infertility etc
There is also very little research into the harms that flow from over-treatment – how many women end up having unnecessary cone biopsies? Is prolapse another risk factor after cone biopsy? There are so many unanswered questions, yet if you want to know why some women choose not to have an elective cancer screening test, take your pick, study after study that conclude we’re immature, uneducated, lower class, non-voters etc
It would never occur to them that some women have simply chosen not to have pap tests, our absolute right, just as many men have chosen not to have prostate screening. (that cancer is much more common, by the way)
We spend millions to basically worry and harm huge numbers of women and we miss too many of these rare cases with our inefficient excess.
IMO, this program does not operate in the interests of women and should be reviewed as a matter of urgency by an INDEPENDENT group, someone like the Nordic Cochrane Institute.
The evidence has moved on and now we see the Dutch about to introduce a new program – 5 hrHPV primary triage tests offered at ages 30,35,40,50 and 60 and ONLY the roughly 5% who are HPV positive and at risk will be offered a 5 yearly pap test. The vast majority of women are HPV negative, not at risk and they will be offered the remaining HPV primary tests. Dutch women are already using a self-test HPV device, the Delphi Screener. (also in use in Singapore and elsewhere) The new Dutch program will save more lives by identifying the roughly 5% at risk and will spare huge numbers of women from a lifetime of unnecessary pap testing and the fairly high risk of potentially harmful over-treatment and excess biopsies.
Our program is currently under review, but I fear excess will be built into any new program.
IMO, breast screening adopts the same disgraceful attitudes. IMO, the benefits are inflated, the serious risk of over-diagnosis was suppressed, there is zero respect for informed consent and women are counted like sheep to achieve a govt-set target. Thanks to Assoc Prof Robin Bell, women have heard about over-diagnosis for the first time and the small chance of benefit. The Nordic Cochrane Institute, after criticizing Breast Screen’s brochure here and in other countries, prepared an excellent summary of all of the evidence, it’s at their website and should be offered to every woman – “The Risks and Benefits of Mammograms”.
Prof Michael Baum, the UK breast cancer surgeon, has also been outspoken about the lack of informed consent in women’s cancer screening – he’s written many great articles.
I made an informed decision not to have breast screening when I turned 50. Women should also note that clinical breast exams and routine pelvic exams have not been recommended for some time, I’d have refused them anyway. Routine breast exams – there is no evidence of benefit, but they lead to excess biopsies. The routine pelvic exam is of poor clinical value, is not a good screening test for ovarian cancer and carries risk, even unnecessary surgery. The only clinical requirement for the Pill is a blood pressure check and your medical history.
It’s interesting the American ob-gyn, Dr Carolyn Westhoff, believes the well-woman exam aggressively promoted to women in the States (and many women are coerced into this exam to get the Pill) is partly responsible for their high hysterectomy rates (1 in 3 will have one by age 60) and for the removal of healthy ovaries after false positive pelvic exams.
Women need to be very careful accepting any information coming from the screening authorities and others with a vested or political interest or pro-screening groups.
It’s horrible to see the harm and distress caused by our programs and even worse, that most of it was avoidable with screening in responsible hands.
http://www.bmj.com/content/326/7395/901 (Dr Raffle’s research)
http://www.nypcancerprevention.com/issue/4/pro/pro_spot/cer_can.shtml (lifetime risk of referral is 77%)
http://www.independent.co.uk/life-style/health-and-families/features/why-im-saying-no-to-a-smear-7577967.html
HPV Today Edition 24, sets out the new Dutch program – registration is free.
http://www.australiandoctor.com.au/news/latest-news/cervical-screening-program-needs-urgent-review–ex (2008) Calls to change our program go back a decade or more.
https://www.mja.com.au/journal/2002/176/11/cervical-screening-time-change-policy
Pap testing and HPV primary testing is not recommended for those under 30 in countries with evidence based screening – pap testing does not change the tiny incidence or death rate in those under 30, but this age group produce the most false positives, it’s risk for no benefit.
HPV primary testing is not recommended either as 40% would test positive, most have harmless and transient infections that will clear naturally, only roughly 5% will test positive at age 30, these are the only women who can benefit from a 5 yearly pap test.
http://www.theage.com.au/national/start-pap-tests-later-say-doctors-20091120-iqyo.html
We should have excluded young women from our program many years ago.
The delay is inexcusable…
http://www.cochrane.dk/
https://www.mja.com.au/journal/2012/196/1/do-benefits-screening-mammography-outweigh-harms-overdiagnosis-and-unnecessary-0 (Assoc Prof Robin Bell)