Dr J. Paul Schofield, Medical Director at Napp Pharmaceuticals reviews Friday’s ABPI and EUPATI-UK network conference.
The conference brought together patients, academics and industry representatives who want to work in partnership to increase the capacity and capability of patients to understand and contribute to medicines research and development and also improve the availability of objective, reliable, patient-friendly information for the public.
On the same morning as the announcement that the UK public had voted to leave the European Union, it was a fantastic to be attending a conference about working with European partners to deliver better patient outcomes.
Following a short welcome introduction by EUPATI's Irene Oldfather we were treated to a rapid fire fact-filled presentation by Nicola Bedlington of the EU Patients' Forum about the EU perspective and challenges being faced on patient involvement and engagement with the pharmaceutical industry, governments and academia.
Her talk summarised the inequities across EU of patient involvement, the need for health literacy and the promotion of innovation based upon the World Health Organisation priority medicines report. She didn't forget to mention the 'money' word in the context of value, pricing and reimbursement of medicines, as well as a need to speed up the drug development and regulatory pathways.
In the second half of her talk Nicola summarised the achievements of EUPATI over the past four-and-a-half years, since its foundation in 2012. The first 50+ expert patients have graduated from the training programme offered via eLearning. The ambition was to train 100 patient experts, called EUPATI Fellows, during the 5 year period of EU IMI funding and I understand that the second cohort is well on its way. However, funding is becoming more uncertain, and is only set to be negatively impacted by the news of the day. Nicola concluded that trust is important between patients, pharma, academia and government, especially set against the backdrop of media cynicism.
The day's agenda then turned to the experiences of 2 EUPATI Fellows who are also patients themselves, Julie and Maria. Their stories were deeply felt and inspiring. Julie has lipoprotein lipase deficiency (LPLD), whilst Maria has paroxysmal nocturnal haemoglobinuria (PNH).
Both shared their personal journeys and how the EUPATI expert patient course has helped them to understand pharma jargon and equipped them with the confidence and knowledge to establish patient support groups. They have gone on to influence drug development for their rare diseases with pharmaceutical companies and through HTA.
A patient panel shared their experiences of influencing research and their passion and drive shone though. Again they explained how they have interacted with academia, government agencies and pharma companies to remove barriers, influence research priorities and support fellow patients. A key takeaway message for me was how they combined intelligence with good communication and a large measure of drive.
I joined a lunchtime panel convened by GenerationR, a young person group involved in improving patient research for their age group. The discussion was wide ranging and explored how different stakeholder groups could get involved with each other to improve trial design, increase clinical trial recruitment and be more inclusive by involving children in trials at all stages of their disease.
The afternoon sessions divided into three parallel workshops covering communication and health literacy from the patient's perspective, the EUPATI toolbox, and finally patient involvement by helping match patients and industry. I was involved on the last of these and found the discussion open and thought provoking.
The memorable day concluded with a summary by the National Institute for Health Research's Simon Denegri. I agreed with his message that it is better to work together than work alone!