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Women “jurors” are asked how to present risk-benefit ratio of breast cancer screening

BMJ 2012; 345 doi: http://dx.doi.org/10.1136/bmj.e7886 (Published 22 November 2012) Cite this as: BMJ 2012;345:e7886
  1. Nigel Hawkes
  1. 1London

A “citizens’ jury” of 21 women is meeting in London this week to help draft new leaflets that will be provided to women in England who are invited to attend breast cancer screening.

The jury, made up of women of screening age recruited on the streets of London, will help draft a form of words for the leaflets and invitation letters that reflect the findings of the Marmot review of breast cancer screening, which reported last month.1

The existing leaflets have been criticised as failing to strike the right balance between the risks and benefits of screening. The review, chaired by Michael Marmot, director of University College London’s Institute for Health Equity, found that for every life saved by mammographic screening, three women were subject to “overdiagnosis,” which meant that in the great majority of cases women underwent unnecessary treatment that brought no benefit. Every year, the review concluded, 1300 women had their lives saved and 4000 had treatment that they did not need.

Reflecting this complex balance in leaflets and letters of invitation is a tricky task, entrusted by the Department of Health to the Informed Choice about Cancer Screening team at King’s Health Partners, led by Amanda Ramirez. As part of the process, women on the streets of London and outside community centres were approached and asked whether they would volunteer their service on the citizens’ jury.

The makeup of the jury seeks to reflect the demographic, socioeconomic, and ethnic makeup of the UK but excludes any women with a diagnosis of breast cancer, as they are not the target of the leaflets. Of the 21 women who arrived for jury service on Monday 19 November at Goodenough College in Bloomsbury, around half described themselves as white British, with the remainder from other ethnic minorities.

Just over half the women were in paid employment, and they came from all parts of London, with the north east and south east most heavily represented. All had been invited to breast screening, and two thirds had attended, close to the national figure of 70%. To make discussion easier they were divided into tables of seven, each with a facilitator from the Office for Public Management. Proceedings were run by Joanne Rule, former chief executive of the charity Cancerbackup.

Unlike a focus group, which aims to elicit opinions that spring to mind, the citizens’ jury approach works by informing participants about an issue and allowing them to come to a view on the evidence they have heard. On the first day the jury heard evidence from Malcolm Reed, professor of surgical oncology at Sheffield University, and Alison Jones, a consultant oncologist from the Royal Free Hospital in London.

Other speakers include experts on screening, on communicating complex health issues, on methods for displaying risks and benefits, and on graphic design. The process was expected to last three days and to focus on how to present the information, not whether to present it.

Although funded by the health department through the national cancer screening programme, the jury is intended to be wholly independent and at arm’s length. To make this clear, funding is expected to shift to Public Health England once that body is legally established.

The same team from King’s Health Partners will also be rewriting leaflets for screening for cervical and bowel cancer, with the assistance, among others, of the BMJ Evidence Centre. “We need to turn the complicated information produced by the Marmot review into something most women will understand and which will help them to make decisions,” Ramirez told the jurors. “The leaflet has to make sense, and we need your recommendations at the end of three days to make that possible.”

Notes

Cite this as: BMJ 2012;345:e7886

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