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Why I value being a patient advocate – and how it can shape clinical trial design


Involving patients and the public is an important and valuable aspect of clinical trial design argues the patient advocates group, the Independent Cancer Patients' Voice.

Posted on 19 August, 2015 by Andy Roast

I was delighted the morning the hospital that treated me for bone cancer asked if I would like to help them improve treatment by being a member of their patient experience project.

It’s not just the hospital that treated me that is seeking patients’ views in order to improve treatment of people they see in the future. NHS England wrote in their Five Year Forward View that the health service as a whole should “engage with communities and citizens in new ways, involving them directly in decisions about the future of health and care services”.

Patient advocacy groups allow patients to give their views to those who treat them about ways to improve clinical care or to conduct trials. One such group is the Independent Cancer Patients’ Voice (ICPV), which has helped to develop more than 100 trials since it was set up in 2009. A new paper from the ICPV provides testimonies from researchers across the country – including here at The Institute of Cancer Research – on the value of involving patients and the public in clinical trial design.

In the paper published in Clinical Oncology, Professor Judith Bliss, who is Director of our Clinical Trials and Statistics Unit, wrote about patient involvement in setting up the POETIC trial – which assessed the role of hormone therapy in hormone-sensitive breast cancer.

Previous research had shown that using a class of hormonal drugs known as aromatase inhibitors during the lead up to and recovery from surgery could improve long-term outcomes. POETIC was set up to determine the exact role of aromatase inhibitor treatment in the weeks either side of surgery. Tissue biopsies were collected at diagnosis and during surgery in order to measure the effect of aromatase inhibitor therapy.

But waiting for surgery can be a confusing and busy time for patients – I remember going back and forth to hospital for appointments with my consultant, and a seemingly endless number of scans and health checks. It’s not only the patient who is kept occupied before surgery; the POETIC trial leaders were busy too, enrolling patients onto the trial, obtaining samples from biopsy and negotiating the varying clinical practices across the 130 centres that took part.

Patient advocates were able to provide a fresh perspective for trial leaders and patients’ opinions were sought on many aspects of the trial, from whether it was acceptable to tell patients about the trial at diagnosis to how best to obtain tissue samples before and after surgery. The patient advocates ‘proved invaluable’ according to Professor Bliss, providing trial leaders with a ‘patient perspective’ and the reassurance that patients would be open to submitting tissue samples for analysis during the trial.

Professor Bliss writes: “The success of the trial is a testament to the involvement of patient advocates in the set-up and recruitment phases. Patient advocate involvement is continuing in the trial follow-up phase through membership of the Trial Management Group, with continued valued support, particularly in relation to the use of tissue and data.”

The trials highlighted in the Clinical Oncology article show how important patient involvement is when designing and managing clinical trials. For me, the positive message comes at the end of the article. Talking about the importance of independent patient oversight in trial design, Maggie Wilcox, President and Founder Member of the ICPV, writes: “Our independence has been key to successful development as effective lay advocates in cancer research because it ensures a direct patient and carer perspective, unfiltered by political, financial or academic strategic requirements.”

Patient advocates are often an institution’s greatest source of information about patients’ concerns – listening to them isn’t only a nice thing to do, but can lead to better treatments too.
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