EU FUNDING WORKSHOP ELF Patient organisation networking day

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

ABOUT US Irene Ferrario Giuseppe De Carlo Jessica Edwards

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?

WHY EU FUNDING? Benefits: – 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

HOW DOES EU FUNDING WORK? European Commission BUDGET TOOLS and PROGRAMMES Every 7 years IMI HORIZON 2020 Innovative Medicine Initiative www. imi. europa. eu/ H 2020 https: //ec. europa. eu /programmes/ horizon 2020/

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

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

H 2020 RESEARCH PROGRAMME • Emergencies and challenges • From the lab to the market • Innovative solutions

H 2020 FUNDING IN HEALTH Health, demographic change and wellbeing Priorities 2016 -2020: 1. Personalised medicine 2. Sustainability of healthcare systems 3. Active and healthy ageing

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

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

BREXIT Nothing changes in the short term

EU PROJECT STRUCTURE Work packages Activities Outcomes / products Activities, budget and timeline defined in the project proposal

WORK PACKAGES 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 7 Dissemination In every project

PROJECT WRITING WHERE PATIENTS CAN PLAY A ROLE Main tasks Patient Input Priority setting ü Choice and list of priorities Project writing ü Review of the project proposal Budget ü Check it cover costs

WP PROJECT MANAGEMENT WHERE PATIENTS CAN PLAY A ROLE Main tasks • Patient Input Daily management and coordination ü Patient Input Platform (PIP) / Patient Advisory Group (PAG) Monitoring and evaluation ü Periodic surveys Ethics ü Ethics and Safety Monitoring Board

WP DISSEMINATION WHERE PATIENTS CAN PLAY A ROLE Main tasks Development of a communication and dissemination plan Patient Input ü Patients’ view ü Patients' network Project website and brand ü Choice of topics and communication tools Web content and social media ü Reports and social media Publication process ü Translation into simple lay language Events ü Project’s ambassadors

FUNDING 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

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

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) • My. Air. Coach: 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)

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

The EARIP project • Co-ordinated by Asthma UK • 12 partners from across Europe • Funded under the FP 7 programme • € 500, 000 grant • 50+ consortium members

Pros: • • ASTHMA UK EXPERIENCE 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

EFA EXPERIENCE my. Air. Coach: • 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

Pro: • • • 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

GET READY Questions to ask yourself : 1. Does the project fit with your organisational objectives? 2. Does this meet the needs of the patients you represent? 3. Do you have the resources (Personnel time, Budget)?

GET STARTED • Networking Health – NCP - net • Check online the EC’s websites Health research & Innovation Horizon 2020 Fit For Health 2. 0

GET STARTED • Work with other patient organisations • Contact us Irene Ferrario Giuseppe De Carlo Jessica Edwards Irene. ferrario@europeanlung. org giuseppe. decarlo@efanet. org JEdwards@asthma. org. uk

IMI

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(ND 4 BB) 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

H 2020 PORTAL • Home - Research Participant Portal ec. europa. eu/research/participants/portal/ • Funding Opportunities

HEALTH CALLS

CALL LIST

OPEN – SINGLE STAGE • H 2020 -SC 1 -2016 -2017 – Personalised medicine deadline: 11/04/2017: - SC 1 -HCO-03 -2017: Implementing the Strategic Research Agenda on Personalised Medicine - SC 1 -HCO-07 -2017: Global Alliance for Chronic Diseases (GACD) prevention and management of mental disorders - SC 1 -HCO-08 -2017: Actions to bridge the divide in European health research and innovation - SC 1 -PM-03 -2017: Diagnostic characterisation of rare diseases - SC 1 -PM-11 -2016 -2017: Clinical research on regenerative medicine - SC 1 -PM-20 -2017: Methods research for improved health economic evaluation

OPEN –TWO-STAGE • 2 STAGE 04/10/2016 (1 deadline) + 11/04/2017 (2 deadline). - SC 1 -PM-02 -2017: New concepts in patient stratification - SC 1 -PM-07 -2017: Promoting mental health and well-being in the young - SC 1 -PM-08 -2017: New therapies for rare diseases - SC 1 -PM-10 -2017: Comparing the effectiveness of existing healthcare interventions in the adult population

UPCOMING • Calls for proposals announced on 20/09/2016 with deadline on 31/01/2017 : - SC 1 -HCO-17 -2017: Support for large scale uptake of Digital Innovation for Active and Healthy Ageing - SC 1 -PM-15 -2017: 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: - SC 1 -PM-16 -2017: In-silico trials for developing and assessing biomedical products - SC 1 -PM-17 -2017: Personalised computer models and in-silico systems for well-being - SC 1 -PM-19 -2017: PPI for uptake of standards for the exchange of digitalised healthcare records

H 2020 - SWITZERLAND • EC Statement (june 2016) valid until December 2016 https: //ec. europa. eu/research/participants/data/ref/h 2020/other/hi/h 202 0 -hi-swiss-part_en. pdf • H 2020 contact point in Switzerland (State Secretariat for Education, Research and Innovation – SERI) http: //bit. ly/2 cqsbbf