Irish Platform for Patient Organisations, Science & Industry

The Irish Platform for Patient Organisations, Science and Industry (IPPOSI) welcomes the election of Lorraine Nolan, Chief Executive of the Health Products Regulatory Authority (HPRA), to the Chair of the European Medicines Agency (EMA).

Lorraine brings a wealth of experience in medicines regulation to the role, together with a strong commitment towards building greater links with the patient community – leading by example in setting up the first HPRA Patient Forum. Over the past five years, thanks to Lorraine’s support, the HPRA has partnered with IPPOSI to deliver the IPPOSI Patient Education Programme. The HRB-funded programme offers individuals with chronic and/or rare conditions the chance to engage in a hybrid learning course to gain a greater understanding of complex areas like medicines regulation, health technology assessment, and clinical trials. Since it began in 2017, over sixty individuals have graduated from the programme with many going on to take up prominent patient involvement roles, including within the European Medicines Agency. Click here to view outputs from the 2021 Graduation ceremony which took place on March 7th, 2022.

Sinead Curran, Director, Human Products Monitoring, HPRA is pictured above at the 2021 Graduation of the IPPOSI Patient Education Programme (L-R: Sinead Curran, HPRA; Derick Mitchell, IPPOSI; Laura McCullagh, NCPE; Deborah Wallace, UCD CRC.

During Lorraine’s tenure as Chair, and working closely together with EMA Executive Director Emer Cooke, we hope that the EMA will continue to grow the number and scope of opportunities for patients to become involved in its work in a meaningful way – from early dialogue with medicines developers to review of market authorisation applications. A tremendous impact has been made in this space in recent years, but like for many others, difficulties around how to intensify, democratise and diversify this patient input persists. It is our hope that as we move forward with a strong person-centred agenda, we make greater use of the potential around patient-reported outcomes, patient preferences, and real-world data. We also believe that the successes achieved at the European level must be adopted by national regulatory agencies and replicated in a sustainable, meaningful and impactful way at the Member State level. 

Number of patients involved in EMA procedures from 2008 to 2020, by procedure type (protocol assistance, scientific advice and parallel procedures with HTA bodies). Data collection on patient involvement in scientific advice procedures began in 2008.  (From Front. Med., 20 January 2022 | https://doi.org/10.3389/fmed.2021.811855

EMA Announcement (17th march 2022) 

EMA Management Board elects Lorraine Nolan as chair | European Medicines Agency (europa.eu) 

2022-03-29T11:37:20+01:00
 

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