19/02/2016

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PATIENT ADVOCATE ADVISORY GROUP MEETING
Me, Evelyn O’Rourke ICORG Patient Advocate Advisory Group(PAAG)
It was an early start this morning to catch the train to Dublin I am glad I dragged myself out of bed though, as it was well worth the trip. For anyone who hasn’t heard of Cancer Trials Ireland or know what they are about I will fill you in on a little background history. I’ll keep it short history was never my strong point!! The group which is a not for profit registered charity was set up in 1996 by a group of cancer consultants with Prof. John Crown as founding chairman. The aim was to create more clinical trial opportunities for patients, by putting in place a formal structure to make Ireland more attractive as a location to international cancer research groups and the pharma industry. Today its membership is made up of 95% of the whole of Ireland North and South’s cancer treating consultants ensuring research is developed at a national level. Since their start CTI has allowed access to research treatments for more that 14,200 patients and this is increasing all the time. If you want information on what cancer trials are currently available in Ireland their website is the place to source it: http://www.cancertrials.ie

What’s all this got to do with you? Well this morning I traveled to The Gibson Hotel for the first ever CTI patient advocate advisory group meeting, in layman’s terms CTI want to know what we the patients have to tell them.

The meeting was chaired by the lovely Evelyn O’Rourke who is well know from the radio and television, Evelyn is a breast cancer survivor and feels very passionately about the role ICORG play in helping patients access the best possible choices for their treatment.

Diane told of her shock at finding out she had breast cancer at 33 her first thoughts being how am i going to tell my family (something we can all relate to). She decided she was going to be proactive in her treatment and got a great sense of empowerment from taking part in a clinical trial, she explained how she felt like a collaborator in her treatment as she put it who knows your own body best only yourself! Diane is now the newly appointed Chairperson of CTI patient advocate advisory group (PAAG)

Joan and John are both EUPATI Trainees this is a European course which aims to give the trainees the tools to communicate effectively with health professionals. This training as John explained allows him to acquire skills to inform himself and others to play a productive part in treatment options instead of being a passenger on the journey.

http://www.patientsacademy.eu/index.php/en/

The Irish Platform for Patients Organisations Science and industry (what a mouth full) or IPPOSI were also represented by Dr. Derek Mitchell CEO he also through the use of slide presentation expressed how important patient participation is, and some of the benefits to patients, who participate. You can get more information on their website about being a clinical trial participant or EUPATI training

http://www.ipposi.ie/index.php

So the aim of the new PAAG group is to be a point of contact, they wish to recoginise what they need to do to help future patients and other advocacy groups access information regarding why you might want to take part in clinical trials, who and where are running these trials, and hopefully give back a sense of control to the patient, at this life changing time. If you would like to become involved or be kept up to date with the groups progress please contact officeadmin@icorg.ie or 01 6677211 and ask to be put on their email list

So as you can see it was a busy morning but a girl can always find some time for a little shoe shopping before the train home a sign of a successful day 🙂