1. 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

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

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

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

5. 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

6. 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

7. 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

8. 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.

9. 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)

10. 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!

11. 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

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

13. EUPATI Toolbox – Content available
PowerPoints
Articles
Fact sheets
Videos
Infographics

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

15. 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. 

16. Patients: Experts by Experience