Helen Macdonald: Overdiagnosis and the fear of being “normal”

Helen Macdonald discusses the key points from Day 1 of Preventing Overdiagnosis

helen_mac“Why we are so afraid to be normal?” Iona Heath asked, as she opened the 2018 Preventing Overdiagnosis conference in Copenhagen. It was a typically thought provoking opening from the retired GP, who is a core member of the scientific committee for the conference. It can be easy to lose sight of patients when you are sitting in a lecture theatre. But Iona managed to make them feel close. Why are doctors so keen to rush to diagnosis, convinced of their own rightness? Doctors almost don’t seem to like people being “normal.” And preventive medicine seems the order of the day. Perhaps because human life is a precarious condition.

Gisle Roksund, a GP from Norway, talked about diagnosis and overdiagnosis throughout his career. “In the beginning was the word,” he said. But nowadays it can be difficult to hear the words a patient is saying, as guidelines compete for clinicians’ attention during consultations. “Find it earlier and do more,” is the general trend. What constitutes disease for common conditions such as hypertension, asthma, polycystic ovarian syndrome, osteoporosis, and several mental health diagnoses has grown. These expanded diseases label more people as sick. And now, there are pre-diagnoses such as pre-diabetes, pre-dementia, and pre-cancer. Perhaps we should all be diagnosed with pre-mortality, otherwise known as life. I liked his description of incidentalomas as internal wrinkles; they sound a lot less worrying.

Tara Montgomery spoke about trust as a way of tackling overdiagnosis from a public perspective. Trust in institutions and experts has been challenged, but yet the public has given them a lot of power. She presented an equation for trustworthiness.

Trustworthiness = credibility + reliability + intimacy / self orientation

Is medicine trustworthy? Are experts (organisations, groups of doctors, or a specific person) credible? Do they demonstrate reliability with a good track record? Is there intimacy (which she suggested was vulnerability). To what extent are we altruistic, as opposed to self-orientated? The problem with the trust equation in healthcare, she explained, is that so many different people and parties are involved. Patients might have to trust several different doctors, groups, or organisation.

We ask patients to trust us when we make a diagnosis, when we say they need a test, and when we report and interpret its results. They trust that we share the full picture, including the uncertainties. Poor trust can lead to overdiagnosis. Patients and the public may place blind faith in authorities. But they can also be confused by mixed messages from different experts, which may lead them to mistrust science. Trust is required for patients to believe in the counterintuitive idea that less can be more.

Tara shared Choosing Wisely’s questions for patients to ask clinicians. But I wonder whether clinicians might find them just as useful. Do I really need this test? What are the risks and side effects? Are there simpler safer options? What happens if I don’t do anything?

Michael Baum, a retired breast surgeon, defended being a good specialist. He said specialists can become technicians if they lose sight of the bigger picture for patients, and bigger issues, such as overdiagnosis. Single issue fanaticism does no good. When he raised issues about overdiagnosis in breast screening some years ago, it was, he said, a lonely battle.

But he wanted to speak about solutions rather than problems, in particular how the psychology of decision making (outlined by Daniel Kahneman in Thinking Fast and Slow) could be useful to overdiagnosis. Fast thinking, “catch it early and catch it small” has obvious appeal as a strategy for cancer. But, “for every complex problem there is an answer that is simple, easy, and wrong,” he said (quoting H L Mencken). Breast cancer does not follow a linear, or a predictable path. Triggers for its progression are unknown. The lesion’s vascularity may be important as this can establish metastasis. But metastases can also be unpredictable, latent, or aggressive, in complex ways.

A more accurate way to understand cancer might come from chaos theory, he suggested. A simple analogy is weather forecasting. Small clouds do not always progress to big ones and cause rain. Using chaos theory, the weather is now much more predictable. Our ability to predict how cancer behaves still has some way to go.

Steve Woloshin and Lisa Schwartz, clinicians and researchers from Dartmouth in the US, are big names in overdiagnosis. They called for greater regulation of disease awareness campaigns, particularly where they are connected to those with vested interests in the topic (such as companies selling a drug for the condition). There are 216 days in the US calendar for disease awareness, they said.

Awareness campaigns have a common themes; the condition is common, it is underdiagnosed, it is serious, but there is something you can do about it (i.e. it is actionable). They may rebrand embarrassing symptoms, such as erectile dysfunction. They may include tick lists begin to define the disease. They may provide guidance on what to ask your doctor. Sometimes these campaigns can do good. They can de-stigmatise, educate, and improve health. But they can also cause fear and undermine public health, particularly if financial interests are in play, such as recent campaigns on excess sweating and dry eyes as some examples.

See www.preventingoverdiagnosis.net for more information on the conference and this year’s speakers. BMJ is a media partner for the conference. It is linked to our campaign on Too much medicine.

Helen Macdonald, clinical editor, The BMJ, and general practitioner.

Competing interests: None declared.