ICPV, a voice with MyPeBS

Independent Cancer Patients’ Voice (ICPV) is one of the partners of the MyPeBS consortium. Two of their members, Emse and Debbie, made a statement on why MyPeBS study is so important to them:

“As patients with lived experience of breast cancer (one of us diagnosed at age 40) and as members of Independent Cancer Patients’ Voice (ICPV), we believe that screening for early detection and treatment of disease is important for women.

We are well aware of the ongoing debate about the risk benefit ratio of screening in this and other cancers.

This study has the potential to significantly improve the risk benefit profile of one of the most important tools in the early detection and diagnosis of breast cancer.

We are aware of and support a number of studies, including MyPeBS, aiming to improve and rationalise detection and diagnostic strategies.  All these studies share one overall aim – improving outcomes for women.

In many countries involved in the study there is already a national screening programme that is stratified solely by age.

We consider these programmes to have room for improvement, rather than having zero value or a negative value.

Women’s overall risk is not uniform however, and a better programme would be able to respond better to a woman’s individual risk profile and invite her to attend screening accordingly.

The MyPeBS study has the potential do exactly this – to reduce the disease and treatment burden for women who may be diagnosed earlier, and at the same time it may potentially identify women who could take part in a programme with longer intervals between tests that reflects their low risk profile.

We believe these outcomes are valued by women, and valuable for women.

As patients who have been actively involved in the development and will continue to be involved in the delivery of the trial, we believe that the voice of future and current patients has been and remains integral to the study.

This includes the development of the methodology and we are particularly pleased that the study takes a holistic approach and includes the psychosocial aspects and impact on women of living with uncertainty.

Women are invited to take part in their country’s screening programme and are invited to take part in this study.

They are not passive recipients of an intervention – they take part in a process that treats them as active partners in their own health care and they participate in an process that is underpinned by informed consent.”