1. ELF Patient organisation networking day
EU FUNDING WORKSHOP
ELF Patient organisation networking day
ERS International Congress 2016
London, 3 September 2016

2. ABOUT US
Irene Ferrario
Giuseppe De Carlo
Jessica Edwards

3. ABOUT YOU EU PROJECTS How many have participated to EU projects?
Any project partner?
TRAININGS
How many took a course/training on EU project funding?

4. WHY EU funding? Benefits: Benefits of EU projects:
Work with international universities, companies and other organisations
Getting insights on new discoveries and achievements in your disease areas
Influence policies
Benefits of EU projects:
New projects and activities
100% funding
Prestige

5. HOW DOES EU FUNDING WORK?
European Commission
European
Commission
BUDGET
TOOLS and PROGRAMMES
Every 7 years
IMI
Innovative Medicine Initiative
HORIZON 2020
H2020
horizon2020/
the tools and programmes listed here are on research and that other programmes provide funding to other topics

6. IMI IMI uses both public (EC) and private funding (pharma) IMI funds:
Medicines, treatments and vaccines
Large projects
More specific topics

7. “Patient-centric approach”
IMI & PATIENTS
“Patient-centric approach”
SHAPE RESEARCH
PATIENTS
MORE EFFECTIVENESS

8. H2020 research programme Emergencies and challenges
From the lab to the market
Innovative solutions

9. H2020 funding in health Health, demographic change and wellbeing
Priorities :
Personalised medicine
Sustainability of healthcare systems
3. Active and healthy ageing

10. Who can PARTICIPATE Consortia are made of: 1 Project coordinator
Project partners
Geographical area
EU 27 + Associate countries:
Switzerland, Norway, BH, FYROM,
Serbia, Turkey etc.
Check with the text of the call

11. HOW TO PARTICIPATE Paid staff Good administration and
ADMINISTRATIVE and FINANCIAL CAPACITY
Paid staff
Good administration and
financial management
Previous experience with funding

12. Nothing changes in the short term
Brexit
Nothing changes in the short term

13. Activities, budget and timeline defined in the project proposal
eu project structure
Activities, budget and timeline defined in the project proposal
Outcomes / products
Activities
Work packages
I will put a link to GANTT and project description (EARIP?)

14. Work packages In every project WP 1 Project management WP 2 Research
WP 3 Screening
WP 4 Interventional study / trial
WP 5 Data collection
knowledge management
WP 6 Health economics
WP 1 Project management
In every project
WP 7 Dissemination

15. Project writing where PATIENTS can play a ROLE
Main tasks
Patient Input
Priority setting
Choice and list of priorities
Project writing
Review of the project proposal
Budget
Check it cover costs

16. WP project management where patients can play a role
Main tasks
Patient Input
Daily management and coordination
Patient Input Platform (PIP) / Patient Advisory Group (PAG)
Monitoring and evaluation
Periodic surveys
Ethics
Ethics and Safety Monitoring Board
PI in implementation / daily management and coordination: development or review of project documents
Eventually distinction between individual patients and patient groups

17. Wp dissemination where patients can play a role
Main tasks
Patient Input
Development of a communication and dissemination plan
Patients’ view
Patients' network
Project website and brand
Choice of topics and communication tools
Web content and social media
Reports and social media
Publication process
Translation into simple lay language
Events
Project’s ambassadors

18. FUNDING Staff costs Hours of work of paid staff Subcontracting
WHAT CAN BE FUNDED
Staff costs
Hours of work of paid staff
Subcontracting
Costs of contracting out a service
Other direct costs
Travel and accommodation
Website hosting
Printing and graphics
Indirect costs
Fixed 25% all direct costs for general expenses

19. NO RESTRICTIONS Patients can play different roles More funding for:
Patient-centred projects
ICT solutions leading to patient empowerment
Patient engagement
Improving patient experiences

20. EU projects - examples
U-BIOPRED: is a research project using information and samples to learn more about different types of asthma.
EARIP: The European Asthma Research and Innovation Partnership (Asthma UK project coordinator)
MyAirCoach: is a project aimed to develop an inhaler device as a self-management tool for people with asthma including measures of environmental factors (EFA consortium member)

21. U-BIOPRED
PIP
Input in WPs & tasks
Project website
Lay language
Social media
Project ambassadors
Read more:
“A short guide to successful patient involvement in EU-funded research”

22. The EARIP project Co-ordinated by Asthma UK
12 partners from across Europe
Funded under the FP7 programme
€500,000 grant
50+ consortium members

23. ASTHMA UK experience Cons: Pros:
Drive a patient led agenda for research across Europe
Incorporate the development of your organisation objectives into a larger project
Organisational reputation for leading a European initiative (future relationships and projects)
Being part of the cutting edge innovation, allows you to exploit this knowledge early for patient benefit – Roadmap for asthma research
Cons:
A LOT of time and financial commitment needed
Responsible (partly) for ensuring external partners do work and meet deadlines
Administrative burden on organisation
Benefits to your organisation:
Some projects will already fit within your organisational planning/objectives
Great way to get the patient voice heard in cutting edge research – great way to advocate for PPI
Reputation – build networks and are asked to be involved in a number of other activities as a result

24. Efa experience myAirCoach: Leading dissemination and exploitation WP
Translating research outcomes into patient-friendly language
Promoting the project through social media and website and in relevant conferences
Liasing with partners for updates on ongoing activities
Responsible for the Advisory Patient Forum:
Involve patients throughout all project stages from the very beginning to beyond the project lifecycle
Support the various roles patients have in the project
Coordinate involving individual patients within the consortium/workpackages

25. Pro: Cons: Ensuring the inclusion of patients perspective in research
Contributing to the achievement of ground-breaking research results
Delivering concrete outcomes to your network of patients
Developing knowledge that can be exploited in other fields (eg Advocacy)
Enlarging your network of partners and stakeholders
Cons:
Find your role: discuss with coordinator and understand where you can contribute
Respect deadlines
Admnistrative tasks

26. GET READY Questions to ask yourself :
Does the project fit with your organisational objectives?
Does this meet the needs of the patients you represent?
Do you have the resources (Personnel time, Budget)?

27. GET STARTED Networking Check online the EC’s websites
Health research & Innovation
Horizon 2020
Health – NCP - net
Fit For Health 2.0

28. GET STARTED Work with other patient organisations Contact us
Irene Ferrario
Giuseppe De Carlo
Jessica Edwards

32. IMI

33. TOPICS
Topics
Addressing the clinical burden of Clostridium difficile infection (CDI): Evaluation of the burden, current practices and set-up of a European research platform (part of the IMI New Drugs for Bad Bugs(ND4BB) programme)
Development of immune tolerance therapies for the treatment of rheumatic diseases
Data quality in preclinical research and development
Next generation of electronic translational safety
Identification and validation of biomarkers for non-alcoholic steatohepatitis (NASH) and across the spectrum of non-alcoholic fatty liver disease (NAFLD)
Joint influenza vaccine effectiveness studies

34. H2020 PORTAL Home - Research Participant Portal
ec.europa.eu/research/participants/portal/
Funding Opportunities

35. HEALTH CALLS

36. CALL LIST

37. Open – single stage
H2020-SC – Personalised medicine deadline: 11/04/2017: - SC1-HCO : Implementing the Strategic Research Agenda on Personalised Medicine - SC1-HCO : Global Alliance for Chronic Diseases (GACD) prevention and management of mental disorders - SC1-HCO : Actions to bridge the divide in European health research and innovation - SC1-PM : Diagnostic characterisation of rare diseases - SC1-PM : Clinical research on regenerative medicine - SC1-PM : Methods research for improved health economic evaluation

38. Open –TWO-stage
2 STAGE 04/10/2016 (1 deadline) + 11/04/2017 (2 deadline). - SC1-PM : New concepts in patient stratification - SC1-PM : Promoting mental health and well-being in the young - SC1-PM : New therapies for rare diseases - SC1-PM : Comparing the effectiveness of existing healthcare interventions in the adult population

39. UPCOMING
Calls for proposals announced on 20/09/2016 with deadline on 31/01/2017 : - SC1-HCO : Support for large scale uptake of Digital Innovation for Active and Healthy Ageing - SC1-PM : Personalised coaching for well-being and care of people as they age
Calls for proposals announced on 8/11/2016 with deadline on 14/03/2017: - SC1-PM : In-silico trials for developing and assessing biomedical products - SC1-PM : Personalised computer models and in-silico systems for well-being - SC1-PM : PPI for uptake of standards for the exchange of digitalised healthcare records

40. H2020 - SWITZERLAND EC Statement (june 2016) valid until December 2016
H2020 contact point in Switzerland (State Secretariat for Education, Research and Innovation – SERI)