Getting Involved In Patient Advocacy by Joan Jordan

26th February 2020

Mike Tyson once said: “Everybody has a plan until you get punched in the face”. Well, I got punched in the brain by my own immune system when I was diagnosed with Multiple Sclerosis in 2010. It was unexpected, unfair, savage and life changing.

In my previous career, I had been a mobile telco software engineer and had lived all over the world. I needed to find my new tribe. I have been a part of the Irish-based IPPOSI and EU- based EUPATI patient advocacy team right from the start. I enjoy the camaraderie of being involved in a patient group and really believe that we are stronger together, regardless of illness. I couldn’t have asked for a better bunch of people to work with and learn how I can play my part in medicines research and development (R&D).

I have a lot to say about living life with Multiple Sclerosis. From the trauma of my diagnosis, my participation in a clinical trial, my re-training from IT Professional to EUPATI graduate, my exit and re-entry to the workplace, becoming a patient advocate and contributing to a research paper, writing a book for the newly diagnosed, my exposure to discrimination, being a carer for my son while I manage a chronic illness, my experiences with Irish and European healthcare systems, to my hopes for people living with disabilities in Ireland and the rest of the world.

The European Patients’ Academy on Therapeutic Innovation (EUPATI) is a multi-stakeholder programme led and hosted by the European Patients’ Forum (EPF).  It is a successful programme that provides education and training to increase the capacity and capability of patients to understand and contribute to medicines R&D, and to improve the availability of medical information for the health interested public. You can find out more here.

IPPOSI – The Irish Platform for Patient Organisations, Science and Industry – is a patient-led organisation that works with patients, government, industry, science and academia to put patients at the heart of health innovation.  IPPOSI promotes this objective through education programmes, information workshops and conferences in areas such as rare diseases, clinical trials, Health Technology Assessment, health information, connected health.  You can find out more here.

Both EUPATI and IPPOSI have developed patient education programmes at the EU-level and Irish-level, respectively.  EUPATI’s Patient Expert Training Course has trained more than 150 patient experts to date and provides an open-access multilingual toolbox that has served more than 3 million users around the world to date. Over 45 people have graduated from IPPOSIs patient education programme in Ireland, which is based on the EUPATI course, but tailored for Irish patients and advocates. 

Together, EUPATI and IPPOSI are part of a global movement whereby patients are becoming educated and more informed about the healthcare treatment and decision-making processes, which often take place without their input.  The history of patient advocacy is based on individuals like me who ‘self-train’. They have extensive experience of a an illness, such as MS, Cancer, Arthritis, and they know the healthcare system and where the gaps are in services and policy. This gives people great confidence to be advocates but there is no system behind the training – it’s all down to individual’s own motivation.  Thankfully I have been equipped with the educational tools and framework that both EUPATI and IPPOSI provide to create the next generation of patient advocates – where the baseline is higher for patients like me in terms of our own education and network and the ability to influence the healthcare setting we are in.

‘Nothing about us, without us’ has been the clarion call from patient advocacy groups for many years.  Never a truer word was said!

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