PATIENT ACCESS + EMPOWERMENT Priorities IPPOSI focuses on a variety of issues relating to the development of and access to health innovations and engagement of patients in health policy development. A unique partnership of Patient Groups, Industry and Science Priorities Bring a patient perspective to clinical research, connected health in Ireland Actively influence policy that impacts on research + access to innovative therapies A patient-led platform that provides a structured way of facilitating interaction between patients, government, industry, science and academia to put patients at the heart of policy and medicines development. In pursuit of this we hold workshops, discussion groups, training days and conferences on policy, legislation and regulation around the development of new medicines, products, devices and diagnostics for unmet medical needs. PATIENT ACCESS + EMPOWERMENT

Over 100 Patient Organisations IPPOSI Members Membership organisation over 100 patient organisations (from both chronic and rare diseases), Over 100 Patient Organisations

IPPOSI Members – Science (examples) over 200 individual scientific/clinical members located throughout the island of Ireland, 250+ Scientific / Academic

IPPOSI Members – Industry (examples) and 17 industry members 17 Companies

Patient-led activities Health Hacks Workshops Conferences Consultations Round-tables Working Groups Training Days Rare Diseases eHealth Clinical Research Health Information Health Economics Patient Registries Biobanking

Patients have a key role in all aspects of health-related research Policy makers / Research Policy Competent authorities Public Research design Informed consent Ethical review Value assessment Health policy Research subject Info provider Advisor Reviewer Co-researcher Driving force Are there enough patient advocates to engage in R&D? Clinical Research Research Ethics Committees HTA agencies & committees

Unique insights The different levels in which Patient Organisations and patient representatives can get involved in the clinical trial process These are examples of points in time when patient insights and engagement would be sought by multiple stakeholders Patients and patient organisations have unique insights in “real life“ and “real needs“ of patients: Training required to get the expertise required to contribute to research & development projects

Educated Patient Communities IPPOSI Training for Members Clinical Research Health Technology Assessment eHealth (coming soon!) IMI-EUPATI develops Patient Education on Medicines R&D Training & Education Disseminates through national platforms Because if patients are going to be more involved, they have to be invited & nurtured. The biggest barrier from where I’m sitting in Ireland is education. And that’s not just for the patient organisations but it’s for the regulator and the agencies themselves - they need to be educated on why it’s important to have patient involvement in healthcare. That’s the brilliance of EUPATI coming at this time, because we need some help in terms of how we communicate that message to the national agencies. So they reach out and bring the patients in in a systematic way. Together, we have to communicate the value of patients being involved in the process to those regulators, to the governments, and to the decision-makers.   And on the other side of that coin, we also have to communicate that to the patient organisations.. Why they need to, why it’s important for them to be involved in the process. And I take that a step further, why it’s important for them to be involved in the medicines development process from the very beginning. And because I think patient-related outcomes is where patient organisations need to be at.

EUPATI develops patient education targeted towards different audiences EUPATI Patient Experts Training Course 100 patient experts English EUPATI Educational Toolbox English French German Spanish Polish Italian Russian Patient advocates (12,000) Workload and burden on patients, patient organisation - 14 months, 6 modules, 250+ hours, 8 days face-to-face EUPATI Internet Library Health- interested public (100,000)

EUPATI contributing to paradigm shift Key Objectives: Develop and disseminate objective, credible, correct and up-to-date public knowledge about medicines R&D Build competencies & expert capacity among patients & public Facilitate patient involvement in R&D to collaborate in academic research, industry research, authorities and ethics committees …and NOT: develop indication- or therapy-specific information!

Areas covered Medicines development process from research to approval Personalized and predictive medicine Drug safety and risk/benefit assessment of medicines Pharmaco-economics, health economics, health technology assessment Design and objectives of clinical trials (& roles of stakeholders) Patients roles & responsibilities in medicines development

EUPATI Toolbox – www.eupati.eu The EUPATI project is receiving support from the Innovative Medicines Initiative Joint Undertaking under grant agreement n° 115334, resources of which are composed of financial contribution from the European Union's Seventh Framework Programme (FP7/2007-2013) and EFPIA companies.

EUPATI Toolbox – Content available PowerPoints www.eupati.eu Articles Fact sheets Videos Infographics

EUPATI Education Platforms Austria Belgium France Germany Ireland Italy Luxem-bourg Malta Poland Spain Switz- erland UK Denmark Portugal Greece Serbia Nether lands Slovakia

IPPOSI = Irish Platform 9 Irish Trainees Rachel Lynch, FibroIreland Damien Peelo, COPD Support Ireland Julie Power, Vasculitis Ireland Awareness Sharon Thompson, Rare Dis. + Palliative care John Dowling, Men Against Cancer Caitriona Dunne, Fighting Blindness Joan Jordan, MS Ireland Katie Murphy, CF Ireland Noirín O’Neill, General Advocate The EUPATI Expert Training Course began in 2014 and is a unique opportunity offering patients and patient advocates expert-level training in medicines research and development. 8 Irish patients are currently enrolled.This innovative patient-led academy aims at developing educational material, training courses and a public internet library to educate patient representatives and the lay public about all processes involved in medicines development.  The aim is to help patients be more educated and involved in the research and development process of new medicines by offering reliable, objective, comprehensive, lay-friendly information and training.  By the time graduates finish their studies, they will have completed an intensive 14 months of e-learning and face-to-face training sessions on the medicines development and research process. So in Ireland we will have 8 EUPATI-certified patient experts equipped with the knowledge to make meaningful contributions to medicines research in Ireland and across Europe. 

Patients: Experts by Experience