Above is the link about the conference referred to in my last post.
And below is the text of what I said to the research planning meeting on “Communicating about Overdiagnosis”.
I am a survivor of the UK Breast Screening Programme. I do know something qualitative educational research, but I’m not a medic nor a statistician. I have learned the hard way about overdiagnosis and breast cancer in the last year, but as I am not au fait with all the latest research, I will address just the first two questions on today’s brief, and add one crazy idea about how I would spend my ten million dollars on research.
In June 2013, following a screening mammogram, I was diagnosed with a small invasive ductal carcinoma. Somehow I had completely missed the debate in the media about overdiagnosis.
Three days later, I typed the naïve question into Google, “Does breast cancer ever go away on its own?”. I was immediately swamped by a deluge of information about overdiagnosis, which I read with a mounting sense of shock and outrage.
After several weeks of prevaricating, and under pressures that you will understand, I did eventually agree to a mastectomy. (by that time, the cancer, though low-grade, had been found to be multi-focal). You will also understand the “decisional conflict” I felt, and continue to feel, since I know – and indeed knew when I made that difficult choice – that mammograms are best at picking up small, slow-growing cancers, not the life-threatening ones. It is quite possible that I am one of the overdiagnosed, but I will never know.
It is because I did not have the information I needed when I needed it that communicating overdiagnosis is relevant to me. I do not want any one else unwittingly to end up as a cancer patient, to have imposed upon them similar agonising decisions, or to feel so duped.
When I myself have tried to communicate about overdiagnosis, I have been met mostly with incomprehension. It is a difficult topic, at odds with the popular perceptions that all breast cancer needs radical treatment, and that catching it early saves lives. Communicating overdiagnosis also involves statistics which most people – including me (and more worryingly, many medics it seems) don’t fully understand. In brief forays into cancer charity chatrooms, I also met veiled hostility: “Count yourself lucky they got it early”, they said. And condescension. “Only look at the information on the cancer charity websites”, they said. My consultant told me I was making things very complex and advised me not to think. So my communication attempts haven’t really had a great reception.
To me, though, the key challenge in communicating overdiagnosis is negotiating the associated ethical issues. I couldn’t get an answer out of the Breast Screening Programme when I emailed (twice) to ask about the ethics of sending me – without any qualification – an information leaflet which had been deemed to be unfit fro purpose. (I got the pre-September 2013 version, which was then under revision. It included one solitary sentence about the risk of being treated for a condition that might never cause any harm.)
But I know I may not be typical. What do people want to know? Knowledge can be uncomfortable and distressing. I found I wanted to protect other women with me in the breast cancer ward from what I knew – because it was too late for us all, by then. So there are ethical challenges in relation to communication: what information to give, when, and to whom. Even raising the issue of overdiagnosis (before any screening or intervention is discussed) releases the genie of uncertainty from the bottle, and presents women with choices that maybe they would rather not have. One criticism of the Swiss Medical Board’s report of Feb 2014 was that the evidence was unsettling to women, to which the response was, “but we wonder how to avoid unsettling women, given the available evidence”. Too right. I think it’s difficult even to involve women in a research focus group without imposing information upon them. How can they know if they want to know something they don’t know already?
Research if I had $10 million
My ten million dollars would be spent on researching how to communicate at a very early stage: that is. trialling ways of helping healthy individuals to understand their own attitudes to risk in relation to their health. This might involve research into the effectiveness of profiling exercises and conversations devised to gauge how much personal responsibilty and control the individual wishes to accept. In my own case, for example, my choices in childbirth were for minimal intervention. I limited and delayed the vaccination of my daughters. I read extensively about both topics. So, with an impartial “Health Counsellor” reviewing these choices with me, I might have concluded that a) I like to be fully informed b) I prefer to keep medical intervention to a minimum and c) I am prepared to accept the associated risks.
In association with such a project, other research would focus on developing communication approaches which neither withhold information nor impose more than is wanted. Perhaps along the lines of those “Choose your Own Adventure” novels, where there is a choice of routes for the reader (“If the character made Choice A , go to p.53”, “If he made choice B, go to page 59,” etc.).The Cancer Research UK website does this quite well, signposting clearly what is coming up on the page, and including links for skipping pages, thereby reducing the likelihood of a reader unexpectedly confronting unwelcome information.
In a parallel fantasy universe, this was all trialled and then rolled out in time for me. So back in Spring 2013, my Health Counsellor and I agreed that I probably wanted a lot of information about my choices, which she skilfully directed me to, guided by the kinds of questions I was asking. I decided against mammography. I felt informed, not fooled. I developed no symptoms.
Or – maybe I did develop symptoms some time later. So I went immediately to the doctor to discuss the help I knew I needed – my trust in the medical profession undiminished.
It is a universe I would love to have inhabited.