Where is the 'User Advocacy' on the Breast Screening Review panel?

Here’s a brief thing. Brief? Ha! We’ll see. I’m back to thinking about the current Breast Screening Review. I wondered when it would be completed, so I went to the page about it on CR-UK’s website. It still said Spring/Summer 2012, as it always has. That’s fine. I sent them an email to ask if there was a more up-to-date estimate.

Then I noticed some info. has been updated. 

There is now a ‘patient advocate’ on the Panel overseeing the review. This is fine too. She has had breast cancer. It’s not clear whether her cancer was identified by screening or not. She is certainly a well qualified advocate and I have no problem with her presence on the Review.

But why is there a Patient Advocate but no User Advocate? If you don’t quite see what I’m getting at, try this:

Women (the users) who turn up for screening are ostensibly well. Most women (still users) will get results that keep them in exactly the same position but they will have been exposed to some risk -  pain, radiation, worry for example. (That’s before we factor in the risks of  overdiagnosis and overtreatment - but somewhat confusingly, at the time that happens those women (service users) have been made into patients....)

The Panel surely needs a ‘user rep.’? I agree that women with breast cancer have relevant views on screening. But so do women without breast cancer, the women who are making breast screening decisions over and over, for whom the review is designed, the ones who are using breast screening services, over and over. These are the women for whom breast screening is a live issue. They should have a role on the Panel.  

I imagine women whose cancer was found by screening perceive the benefits of screening quite easily. I imagine many of those whose cancer was found without screening also perceive benefit, albeit one that did not happen to fall to them. I’m also pretty sure most of the women who experience overdiagnosis and overtreatment don’t actually know that was their outcome so they, too, will remain fixated on benefit.

Therefore, I am concerned that there will be an unintended bias, tilted towards screening. I am absolutely not suggesting the patient rep. is biased, in any direction. I know nothing of her point of view. I am merely observing that the women directly engaged in screening have been missed out, and a patient advocate for women with breast cancer substituted as equivalent when they are not. This could create a underlying tug in the direction of pro-screening. 

Or maybe it's just a massive category error with no effect? 

To try and ensure it doesn’t have an effect, the Panel needs an undiagnosed lay women, keen to grapple with the risks of breast screening and able to press home the importance of unbiased information in helping women make informed choices on breast screening. Every time a woman is invited to screening she could be making a new decision on whether to go, or not. 

Breast screening is about screening, not about breast cancer. Once someone has breast cancer they are no longer 'users' of well women breast screening services - but there are a lot of women who are, and they have valuable and pertinent user experience to share. (God knows where I fit! I'm fully engaged with the screening issue and decided against screening last year as I was unable to make an informed choice as the informed bit was partial- in both senses. I have never seen inside a breast screening unit. Perhaps the panel also needs a could-be-a-user-but-isn't-advocate?)  

Anyway. Basic point - NHS Breast Screening Service users are not patients.  They are women with screening dilemmas. Therefore, undiagnosed women, with current screening dilemmas, should have a user advocate on the Panel. 

Comments

user advocacy on the screening review panel

Women deciding whether to be screened (again) get information biassed in favour of screening. Since people don't know what they don't know, they don't know what they need to know to make an informed decision. How could these users help the review panel? As you say, most screen-detected women believe that without screening, they wouldn’t be here now; if true of any, they are few. The rest have either had no difference made to their life expectancy by screening or have been treated unnecessarily. If the so-called patient advocate on the review panel wasn’t screen-diagnosed, the fact that she has had breast cancer is an irrelevance in a review of breast screening. If she was screen-diagnosed she may still believe falsely that her death was prevented as a result of screening when at best it may have been, in which case her presence is an imbalance. If she is both screen-diagnosed and knows that the chance is very small that screening has made the difference between life and death in her case and that if she is a winner then many others are losers, then she also knows that this is not what women are told. It is still not obvious she will conclude that they ought to be told, since screeners themselves don’t allow that it is unacceptable to save some lives (if any) at the cost of other people’s wellbeing without informing the people taking the gamble that nobody knows whether they will come out winners or losers but there aren’t many winners. So she is not advocating for me - I was an undiagnosed service user until made a patient; I have no way of knowing whether I ever would have been had I not been screened; that I found this out from other sources, after treatment, appals. The obvious conclusion is: inform before screening. That’s not rocket science. On the track record I am not confident she or any of those guys get that. This is what few users know, all users should know, but the only ones who will tell them are people like me, who are few - the professionals prevaricate because it threatens uptake; but nobody wants to listen to patients. Ms Wilcox, although supposedly a patient advocate, is probably on the panel because she has a health care background, again irrelevant. We don’t need a review to know what women should have been told all along, and the review won’t change the facts. The only question about the review, since I’ll be danged if they stop screening even if they find it not cost-effective and harmful, is whether they will change the information from misleading to barely adequate, since an information leaflet alone is not enough to prepare clients for a test with such serious risks and so little chance of benefit.

screening users

You make a very cogent point that I had completely missed.
I gave evidence to the review committee and faced this rather formidable lay rep. I googled her and agreed that she was well qualified but the point you make is that every woman who becomes a "patient" as a result of screening will reinterpret her experience in a favorable manner. This is not bias but a natural human response.

Natural human response

Great point. I had in MIND the idea of a 'natural human response' but clearly that had leaked away, once I'd typed 'bias'. Happy to be so correctly corrected. The natural response to any screening is its apparent logic, so 'what could possibly be wrong with it?' is a big issue and is where the trouble starts.... I'm glad we agree that my point about the big difference between women making screening choices, and women with cancer is actually a point worth making. I wasn't sure....