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: 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

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

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

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

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

H2020 funding in health Health, demographic change and wellbeing Priorities 2016-2020: Personalised medicine 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 Paid staff Good administration and ADMINISTRATIVE and FINANCIAL CAPACITY Paid staff Good administration and financial management Previous experience with funding

Nothing changes in the short term Brexit Nothing changes in the short term

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?)

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

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

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

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

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

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) 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)

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”

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

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

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

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

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)?

GET STARTED Networking Check online the EC’s websites Health research & Innovation Horizon 2020 Health – NCP - net 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(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

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

HEALTH CALLS

CALL LIST

Open – single stage H2020-SC1-2016-2017 – Personalised medicine deadline: 11/04/2017: - SC1-HCO-03-2017: Implementing the Strategic Research Agenda on Personalised Medicine - SC1-HCO-07-2017: Global Alliance for Chronic Diseases (GACD) prevention and management of mental disorders - SC1-HCO-08-2017: Actions to bridge the divide in European health research and innovation - SC1-PM-03-2017: Diagnostic characterisation of rare diseases - SC1-PM-11-2016-2017: Clinical research on regenerative medicine - SC1-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). - SC1-PM-02-2017: New concepts in patient stratification - SC1-PM-07-2017: Promoting mental health and well-being in the young - SC1-PM-08-2017: New therapies for rare diseases - SC1-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 : - SC1-HCO-17-2017: Support for large scale uptake of Digital Innovation for Active and Healthy Ageing - SC1-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: - SC1-PM-16-2017: In-silico trials for developing and assessing biomedical products - SC1-PM-17-2017: Personalised computer models and in-silico systems for well-being - SC1-PM-19-2017: PPI for uptake of standards for the exchange of digitalised healthcare records

H2020 - SWITZERLAND EC Statement (june 2016) valid until December 2016 https://ec.europa.eu/research/participants/data/ref/h2020/other/hi/h2020-hi-swiss-part_en.pdf H2020 contact point in Switzerland (State Secretariat for Education, Research and Innovation – SERI) http://bit.ly/2cqsbbf