Patient advocacy in breast cancer research

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Published: 4 Aug 2016
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Maired Mackenzie - Independent Cancer Patients' Voice, UK

Maired Mackenzie speaks with ecancertv at the 2016 BACR and ECMC Joint Meeting about how her breast cancer diagnosis led to her involvement with Independent Cancer Patients' Voice, and the possible impacts of chemoprevenative strategies discussed at the meeting.

She describes her roles, a patient representative and access committee member for aspirin chemoprevention and Breast Cancer Now, respectively, and her impressions of the conference overall.

 

BACR & ECMC: Therapeutic interventions for cancer prevention

Patient advocacy in breast cancer research

Maired Mackenzie - Independent Cancer Patients' Voice, UK


I’ve been a member of Independent Cancer Patients’ Voice since 2009. I joined because I wanted to do something in research after my breast cancer treatment and didn’t want to do pink and fluffy stuff so that’s why I got into research, stimulated by Maggie Wilcox. In my capacity at this conference I’m one of the lay members of the UK Therapeutic Cancer Prevention Network steering group which is an absolutely really exciting and stimulating group of people. I wanted to join this because I felt I had every treatment going for my cancer which may not have been all that necessary. So I’m very interested in reducing treatment to what is effective and necessary and that’s kind of led on to an interest in prevention, both in the primary setting and for recurrence. And prevention just seems to be the way forward for the future. We want to stop people going through horrendous treatment and especially young people with hard to treat cancers. If we can prevent those at an early stage, if they can pick up the biomarkers, which is why this sort of meeting is so exciting that all of these things are happening, it may not be in my lifetime but I’m sure it will happen at some point that we can stop these young people going through things with rare cancers. So that’s what my passion is.

One of the things that was discussed a lot yesterday with aspirin, and I’m one of the patient representatives on the AddAspirin clinical trial on the breast cohort which is recruiting tremendously well. That’s another really enthusiastic group of people that welcome us patient representatives into their team as a key part of the team, as was described by this is what the aim of Independent Cancer Patients’ Voice is and that is what I really enjoy doing. I’m also on the access committee for the Breast Cancer Now tissue bank so no tissue is requested for research without lay members reading the protocol, reading the lay summary, commenting on it, even if it’s going back and saying, ‘We’re not sure why you’re doing this. Maybe we don’t like it,,’ but they have to get through us first which is really good. And the responses that I’ve had back from researchers that I’ve commented, they’ve always answered my question, generally got it just right. So that’s what I do.

What are your thoughts on the BACR conference?

This conference, as I say, it’s the first one for this group which has only been formed for just over a year. So I think it’s been absolutely fantastic and stimulating and it’s also really good to see that as well as the eminent people speaking there’s been all the youngsters and the post-docs, PhD students, giving their plans for the future which is wonderful from our point of view.