second forum of the scientific panel for health ‘health ......second forum of the scientific panel...

Second forum of the Scientific Panel for Health

Second Forum of the Scientific Panel for Health1

‘Health research in a connected and participative society’

Brussels, Belgium, June 9, 2017

1 https://ec.europa.eu/programmes/horizon2020/en/h2020-section/scientific-panel-health-sph


Executive Summary

Second forum of the Scientific Panel for Health In 2016, the Scientific Panel for Health (SPH)2 outlined its vision for health research and the need for a comprehensive policy and actions. It was proposed that ‘A long-term mechanism to ensure these policies and quality of research requires a science-led multi-stakeholders’ platform for European transdisciplinary health and biomedical research which could take shape as a European Council for Health Research or an Institute for Health.’ (Sipido K et al., Lancet. 2016; 388(10047):865-6). In a consultation process and during interactive workshops, stakeholders raised relevant points and called for further development of the proposal (full report and executive summary available from the SPH website1).

The aim of this second SPH Forum was to discuss key aspects raised by stakeholders and by the European Commission: the need for broad participation of society, building on the potential of Europe and the digital innovation, and exploring novel models of collaboration to enhance the value of health research. Manuel Heitor, Portuguese Minister of Health, further stressed the importance of this debate for health in his opening address.

Future challenges for health research

Health care and research should focus on achieving a healthy life, beyond treating disease; promoting behavioral change to reduce lifestyle risk factors is essential. Teaching young children about health and lifestyle may help to instill a message with life-long impact. Programs for early disease detection reach across morbidity from degenerative brain disease and CVD. Promoting adherence to

2 https://ec.europa.eu/programmes/horizon2020/en/h2020-section/scientific-panel-health-sph


medication supports quality of life in chronic disease. In all of this, community-driven actions are highly successful because of the high degree of participation. A European Council for Health Research could help setting priorities, as in the strategic action plan in the USA, and could focus on healthy life, with multiple streams of activity, including motivating young people to participate in health research. It could provide the necessary support for bottom-up approaches through community actions.

Citizens and patients at the center of health research

Patient and public involvement in clinical and other research contexts may be anchored in some institutions, but patient and public involvement in health research and health care are still underachieving. Several recommendations were shared:

• Patients playing different roles: as co-researchers to generate ideas and facilitate data collection, capture and review; as advisers; and as participants in policy. Educating patients leads to patient experts.

• Novel trial design to optimize patient access and participation in novel treatments, as within Cancer Core Europe.

• To achieve authentic patient empowerment, patients need to have a say in how value is measured in health care.

• It is important not just to see the data but to see the patient. The lack of access of patients to their own data is a waste of co-creation opportunity: it disengages and disempowers patients, and wastes positive use of those data.

Participation is not about involvement of patients, but about engaging patients. Policy initiatives and perspectives to increase participation Research is expected to benefit society, economically, socially and in well-being. Mechanisms to evaluate and demonstrate benefit can contribute to public participation and influence policies.

• In the UK, the Research Excellence Framework invited the scientific community to present cases of impact, with independent verification. This assessment of societal value provides important feedback to the public and to funders.

• For impact, research at the national level is no longer sufficient and global cooperation is necessary. The Federation of European Academies of Medicine (FEAM) brings together national academies and the top biomedical and health scientists of Europe providing a major support mechanism for research policy.

• Equity in health and health research throughout Europe is still lacking despite increased scientific impact from the EU13 and the fact that Central-Eastern Europe has become a hotspot for clinical trials. A proposed European Council for Health Research needs to be inclusive and address health inequity.

Digital innovation in health care The mid-term review of the Digital Single Market has introduced digitalization of care as a priority. How can we leverage the opportunities of the digital world, connecting stakeholders, giving a voice to the patient, and connecting health care professionals as well as public and private parties?


• Privacy means that personal data must be used securely, but not that they should be secured from use. Appropriate law needs to go hand in hand with good technology and good data governance, to build public trust.

• Digital technologies enable a direct connection to the patient and long-term follow-up of outcomes and Quality-of-Life. Standardization of data, a central data repository, and data sharing in an anonymized manner are necessary.

• Big data analysis can support public health by helping to make care sustainable and to save lives. Whatever health-related big data are used for, in the center of this, is the patient.

• Health Technology Assessments are dependent upon good health registers. More research on how to use these is needed, including new methodologies and capacities with focus on the perceptions and preferences of patients.

Models of collaboration across sectors in health research

To achieve success in the competitive field of translational biomedical research it is essential to generate critical mass, to forge connections between different disciplines and between basic research and clinical medicine, and to share cohort, data and high-end, cutting-edge infrastructure.

• Successful partnerships between renowned clinical and prestigious non-clinical research institutions in Germany could serve as a model to grow at EU level. A European Council for Health Research may help establish a new framework platform, creating added value, and bringing Europe to the forefront in international biomedical research.

• To ensure sufficient resources and maintain the current standard of care, calls for increased management of one’s own health and citizens need more insight. EIT Health has built a strong partnership including citizens, supporting innovation and business development, providing education to citizens, scientists, entrepreneurs, and leaders of health care systems.

• The recently launched European Reference Networks (ERNs) connect expert centers on rare diseases for better patient care. ERNs provide a unique basis to perform research linked to care but have no dedicated funding. A comprehensive policy across health care and research could address this gap.

Conclusions The dialogue to develop a European Council for Health Research was launched successfully and generated many ideas. The aims are to create synergies, collating separate goals for research, health care, prevention, and public health, into a single and inclusive research agenda. An adaptive, innovative and people-centered research framework will contribute to the project of social innovation for Europe. The final goal is to increase the impact of health research throughout Europe, creating societal and economic value for Europe and the world.


NOTABLE QUOTES “There are many competing political priorities, so we must all shout about the importance of health research and innovation systems.”

Carlos Moedas, Commissioner Research, Science and Innovation, European Commission

“Specific needs for health research need further investment and require a collective effort in the years to come”

Manuel Heitor, Minister of Health, Portugal “..to have an impact on health, go to the communities.”

Valentin Fuster, Director of Mount Sinai Heart and Physician-in-Chief at the Mount Sinai Medical Center in New York, and General Director of the National Center for Cardiovascular investigation in Madrid, Spain

“Scientific involvement and policy work must go together.” Tamas Bereczky, communication adviser at European Patients Academy for Therapeutic Innovation (EUPATI)

“Participation is about synergy and value, the public must retain ownership of research.”

Barbara Prainsack, Professor in Sociology, King’s College London, United Kingdom

“From a Cancer Core of excellence towards a European Cancer Institute” Alexander Eggermont, General Director Gustave Roussy Cancer Center, Paris, France

“The lack of access of patients to their own data is a waste of co-creation opportunity, disengaging and disempowering patients, and leading to waste of positive use of those data.”

Petra Wilson, Director at Health Connect Partners, Belgium “Health research is for the benefit of society, impact should be made visible.”

Stephen Holgate, MRC Clinical Professor of Immunopharmacology at the University of Southampton, United Kingdom

“Medical academies for science policy expert, independent, influential, trusted advisers.”

Bernard Charpentier, President of the Federation of European Academies of Medicine (FEAM), Paris, France


“Enhance the value of health research by having an inclusive agenda for Europe.” Krzysztof Klincewicz, Professor at the University of Warsaw, Poland

“When data are used securely, this brings value for people, and value for public health.”

Ain Aaviksoo, Deputy Secretary General for E-services and Innovation at the Ministry of Social Affairs in Estonia

“Let’s redesign clinical research – making it truly patient-centered.” Denis Lacombe, Director General of the EORTC, Brussels, Belgium

“Bringing e-data to life informs politicians for a change in public health and care.” Miklos Szocska, former Minister of State for Health of Hungary, and currently Director of the Health Services Management Training Center of the Semmelweis University

“Development of e-capacities is necessary for assessing the true value of new treatments.”

Finn Børlum Kristensen, Past Chairman of the Executive Committee, European Network for HTA (EUnetHTA), Denmark

‘Centers of excellence as drivers for change.” Otmar Wiestler, President of the Helmholtz Association of German Research Centers, Germany

“Connecting stakeholders to accelerate innovation in health” Sylvie Bove, CEO of EIT-Health, Germany

“ERNs offer a unique opportunity for research - to be included in a comprehensive policy.”

Nicoline Hoogerbrugge, Head of the multidisciplinary Hereditary Cancer Clinic of the Radboud University Medical Center, Nijmegen, The Netherlands

FamilyName FirstName Organisation CountryAaviksoo Ain Nationalgovernment MinistryofSocialAffairs Estonia

Bereczky Tamás PatientorganisationEuropeanPatients'AcademyforTherapeuticInnovationEUPATI Hungary

Bove Sylvie NGO EIThealth GermanyCHARPENTIER Bernard Researchorganisation FEAM BelgiumCupers Philippe EuropeanCommission EuropeanCommission,DGRTD EUEGGERMONT Alexander Hospital GustaveRoussyCCC FranceFuster Valentín SPH CNIC-MountSinaiHospital UnitedStatesGanten Detlev SPH WorldHealthSummit,CharitéFoundation GermanyHofstraat Hans SPH PhilipsResearch NetherlandsHolgate Stephen SPH UniversitySouthampton UnitedKingdom

Hoogerbrugge Nicoline HospitalRadboudUniversityMedicalCenterNijmegenTheNetherlands Netherlands

Kerstiens Barbara EuropeanCommission EuropeanCommission,DGRTD EUKissneHorvath Ildiko SPH NationalKoranyiInstituteforPulmonology HungaryKlincewicz Krzysztof Researchorganisation UniversityofWarsaw Poland

Kristensen FinnBoerlum UniversityUniversityofSouthernDenmark,FacultyofHealthSciences Denmark

Lacombe Denis Researchorganisation EORTC BelgiumMatthiessen Line EuropeanCommission EuropeanCommission,DGRTD EUNorstedt Irene EuropeanCommission EuropeanCommission,DGRTD EU

Palkonen Susanna SPHEuropeanFederationofAllergyandAirwaysDiseasesPatientAssociation Belgium

Prainsack Barbara University King'sCollegeLondon UnitedKingdomSipido Karin SPH KULeuven Belgium

Szócska Miklós UniversitySemmelweisUniversity-HealthServicesManagementTrainingCentre Hungary

Vlad Amalia EuropeanCommission EuropeanCommission,DGCNECT EUWiestler OtmarD. Researchorganisation HelmholtzAssociation GermanyWilson Petra SmallormediumsizedcompanyHealthConnectPartners/FTIConsulting Belgium

Participants

SpeakersandChairs

FamilyName FirstName Organisation CountryAgricola Eleonora Hospital BambinoGesùChildren'sHospital ItalyAligiannis Konstantinos Patientorganisation EuropeanPatients'Forum(EPF) Belgium

Ancans Janis NationalgovernmentStateEducationDevelopmentAgencyRepublicofLatvia Latvia

Arevalo Gonzalo Nationalgovernment CarlosIIINationalhealthinstitute SpainArnaud Olivier Patientorganisation JDRFInternational France

Auffray Charles ResearchorganisationEuropeanInstituteforSystemsBiology&Medicine France

Aunemo Helga Other Mid-NorwayEuropeanOffice NorwayAvnet Sofia Researchorganisation IstitutoOrtopedicoRizzoli ItalyBaay Marc SmallormediumsizedcompanyP95 Belgium

Baddack-Werncke Uta FundingagencyNationalContactPointHealth,DLRProjectmanagementagency Germany

Baldini Nicola Researchorganisation IstitutoOrtopedicoRizzoli ItalyBaričević Jelena Other DubrovnikNeretvaRegion BelgiumBarrionuevoHafner Marta Fundingagency InstituteofHealhCarlosIII SpainBattaglia Serena Other ECRIN-ERIC FranceBeger Birgit NGO ECCO BelgiumBenAttia Sarra Researchorganisation LuxembourgInstituteofHealth LuxembourgBensemmane Sherihane Other ESICM BelgiumBetz Charles Nationalgovernment Luxinnovation LuxembourgBoisseau Patrick Researchorganisation CEA FranceBos Andrea Other Neth-ER NetherlandsBoudes Mathieu Patientorganisation Eurordis FranceBouillon Roger University KULeuven BelgiumBrazys Sara EuropeanCommission,DGRTDEuropeanCommission EUBrevetti Flavia SmallormediumsizedcompanyMoverim BelgiumBulto Olivier SmallormediumsizedcompanyKcity Belgium

Camilo Joana UniversityUCP-CREATINGHEALTH-ResearchandInnovationFunding Portugal

Capitaine Laura NGO EuropeanAssociationfortheStudyoftheLiver Belgium

Casarin Giada OtherAutonomousProvinceofBolzano/Bozen-SouthTyrol.LiaisonOfficeBrussels Belgium

Celis Julio SPH DanishCancerSocietyResearchCenter Denmark

Chiotan Cristina NGO EuroHealthNet BelgiumChristensen Lina University AarhusUniversity/CDEU BelgiumClay Vincent IndustryassociationorcompanyPfizer BelgiumConti Valeria Other RegionePiemonte BelgiumCoriat Anne-Marie Fundingagency WellcomeTrust UnitedKingdomD'Amario Rosanna EuropeanCommission,DGRTDEuropeanCommission EUDavies Berwyn University WelshHigherEducationBrussels UnitedKingdomDeMauro Alessandro IndustryassociationorcompanyJanssenPharmaceutica BelgiumDePalma Laura University UniversityofFoggia Italy

DeRaeve Paul NGOEuropeanFederationofNursesAssociations(EFN) Belgium

Degos Laurent SPH UniversityParisVII FrancedelCorte Maite Other FinnovaFoundation BelgiumDenin Nikolay EuropeanCommission,JRC EuropeanCommission EUDenjoy Nicole IndustryassociationorcompanyCOCIR BelgiumDziubczynska-Pytko Anna Other NCPHealth,IPPTPAN PolandEjdum-Bøgh Kirsten Other NorthDenmarkEUOffice BelgiumEklund Malin Fundingagency SwedishResearchCouncil BelgiumEklund Max Researchorganisation EuropeanMolecularBiologyLaboratory GermanyEllmeier Wilfried Other AllianceforBiomedicalResearchinEurope AustriaFalco Lucas Other Covington BelgiumFärber Andri University ZHAWSchoolofManagementandLaw SwitzerlandFERRER ANA Hospital INCLIVAHEALTHRESEARCHINSTITUTE SpainFotiadis Stavros University QMUL UnitedKingdomFrackowiak Richard SPH EPFL SwitzerlandFRANCOIS GuyM. Other EuropeanSocietyofIntensiveCareMedicine BelgiumGal Diane University KULeuven Belgium

Galli Viviana NGOEuropeanAllianceforResponsibleR&DandAffordableMedicines Belgium

Gay Steffen SPH UniversityHospitalofZurich SwitzerlandGayo Diallo University UniversityofBordeaux FranceGeris Liesbet Researchorganisation VirtualPhysiologicalHumanInstitute BelgiumGómezQuintanilla Marta Nationalgovernment CDTI SpainGonzalez Anais Other EITHealth(Spain) SpainGoossens Herman University UniversityofAntwerp Belgium

Graf Saskia SmallormediumsizedcompanyBavarianResearchAllianceGmbH GermanyGray Claire Other LERU Belgium

Gundel Silke ResearchorganisationHelmholtzAssociationofGermanResearchCentrese.V. Belgium

GUNN Wendy University KULEUVEN BelgiumHaar Sören Other EACON BelgiumHawrot Tadeusz NGO EuropeanBrainCouncil BelgiumHelgason Erlendur University UniversityofOslo NorwayHelmle Laszlo EuropeanCommission,DGRTDEuropeanCommission EUHoehn Karen Fundingagency BMGF BelgiumHolliday Phil University WhiteRoseUniversityConsortium UnitedKingdomIannazzone Sabrina NGO ECCO Belgium

Irujo Mikel OtherDelegationoftheGovernmentofNavarreinBrussels Spain

Ishiwa aki Other RegionEmilia-Romagna BelgiumJackson Sally SmallormediumsizedcompanyP95 BelgiumJagersma Christian Hospital UniversityMedicalCenterUtrecht NetherlandsJohansen MalinSolli University UniversityofOslo NorwayKaser Arthur NGO UnitedEuropeanGastroenterology,UEG AustriaKorbel Jan Researchorganisation EMBL Germany

Kozhaeva Olga NGOSIOPEUROPE(theEuropeanSocietyforPaediatricOncology) Belgium

Krell Andreas ResearchorganisationEUliaisonofficeoftheGermanresearchorganisations Belgium

Krukowska Agnieszka IndustryassociationorcompanyJohnson&Johnson Belgium

Kuss Katharina NationalgovernmentSpanishFoundationforInternationalCooperation,HealthandSocialAffairs Spain

Lange Peter Other LangeConsult GermanyLarin Rachel NGO EUREGHA BelgiumLEE YoonBeen Researchorganisation KERC(Korea--EUResearchCentre) Belgium

Lee WenHwa ResearchorganisationStructuralGenomicsConsortium-UniversityofOxford UnitedKingdom

LEROY Josiane Other civilsociety BelgiumLuyten Frank SPH KULeuven BelgiumMaccaferri Simone University UniversityofBologna Italy

Macdonell Andrew Researchorganisation UnitedKingdomResearchOffice(UKRO) BelgiumMachalska Magdalena IndustryassociationorcompanyCOCIR Belgium

Macintyre Elizabeth UniversityUniversitéSorbonneParisCité(Descartes)/EuropeanHematologyAssociation France

Makaroff Lydia Patientorganisation EuropeanCancerPatientCoalition BelgiumMassay-Kosubek Zoltán NGO EuropeanPublicHealthAlliance(EPHA) BelgiumMeunier Francoise SPH EORTC BelgiumMickel Christoph University Goethe-University GermanyMikkilä Vera Fundingagency AcademyofFinland FinlandMobasser Hamed NGO FederationofEuropeanAcademiesofMedicine BelgiumMueller Michael Hospital UniversityHospitalCologne GermanyMUÑOZGARCIA Nieves University UNIVERSIDADDEJAÉN SpainNagyova Iveta NGO EuropeanPublicHealthAssociation-EUPHA Netherlands

NietoGuerrero Virginia NationalhealthcaresystemorassociationofhealthcaresystemFundaciónProgresoySalud,MinistryofHealthoftheRegionalGovernmentofAndalusia Spain

Nuotatore Pietro SmallormediumsizedcompanyBode BelgiumOertel Wolfgang SPH PhilippsUniversityMarburg GermanyOntavilla iris Fundingagency IMI BelgiumOusland AsbjornRune Hospital OsloUniv.Hospital Norway

Passeri Francesca ResearchorganisationIstitutoScientificoromagnoloperlostudioelacuradeiTumoriSrlIRSTIRCCS Italy

Pavalkis Dainius SPH LithuanianUniversityofHealthSciences LithuaniaPennant-Jones Evette Nationalgovernment WelshGovernment BelgiumPetersen Anne University CopenhagenEUOffice BelgiumPritchard Stuart NGO WellcomeTrust UnitedKingdomQuaglio Gianluca Other EuropeanParliament Belgium

Rägo Lembit NGOCouncilforInternationalOrganizationsofMedicalSciences Switzerland

Robaczewska Joanna University HasseltUniversity BelgiumRomain Severine EuropeanCommission,DGRTDEuropeanCommission EURosenmoller Magda University IESEBusinessSchool/EITHealth SpainRuszanov Anett Other ERRIN Belgium

Saeter Gunnar HospitalDivisionofCancerMedicine,OsloUniversityHospital Norway

Saleh HannanHamid Other CentralDenmarkEUOffice Belgium

SánchezJiménez ÓscarDavid Researchorganisation CentrodeInvestigaciónPríncipeFelipe SpainSandberg Gunnar Fundingagency Vinnova SwedenSchenk Ellen Hospital ErasmusMC Netherlands

Seebohm Annabel NGOStandingCommitteeofEuropeanDoctors(CPME) Belgium

Seri Marco UniversityDepartmentofMedicalandSurgicalSciences,UniversityofBologna Italy

Simulescu Loredana Researchorganisation AllianceforBiomedicalResearchinEurope BelgiumSipido Eveline NGO EuropeanAcademyofNeurology-EAN ItalySlotPovlsen Jane Other NorthDenmarkEUOffice BelgiumSomers Hilde EuropeanCommission,DGRTDEuropeanCommission EUStallknecht BenteMerete SPH UniversityofCopenhagen DenmarkSzczepanska Anna IndustryassociationorcompanyEFPIA BelgiumTABACZYNSKY Manon Other OccitanieEurope France

TellesAntunes Helena NationalhealthcaresystemorassociationofhealthcaresystemCentroHospitalarLisboaCentral,NoveMedicalSchool Portugal

Torres Federico NGO EULAR BelgiumTran ThiDung SmallormediumsizedcompanyP95 BelgiumTronci Enrico University SapienzaUniversityofRome ItalyvanEnst Joris Researchorganisation Sanquin NetherlandsvanVilsteren Carmen University TU/e NetherlandsVancrombrugge Thierry Nationalgovernment FODJustitie BelgiumVermoesen Eline Patientorganisation ICPBinterstitiëlecystitisBelgium BelgiumVilaplanaLlin Sandra SmallormediumsizedcompanyK-veloceI+D+i SpainVillanueva Silvia EuropeanCommission,DGRTDEuropeanCommission EU

Vink Margrietha HospitalErasmusUniversityMedicalCenterRotterdam-ErasmusMC Netherlands

Voitzwinkler Fanny NGO GlobalHealthAdvocates BelgiumvonWitsch Matthias Fundingagency DLRProjectManagementAgency GermanyVulcănescu Răzvan Nationalgovernment NationalHealthInsuranceHouse Romania

Vus Viktor UniversityInterregionalAcademyofPersonnelManagement Ukraine

Ward Brian NGO EuropeanRespiratorySociety BelgiumWhyte Jacqueline NGO ScienceEurope Belgium

Wilkinson Jamie NGOPharmaceuticalGroupoftheEuropeanUnion(PGEU) Belgium

Wirz Markus University ZurichUniversityofAppliedSciences SwitzerlandWolters Willem NationalhealthcaresystemorassociationofhealthcaresystemNFU NetherlandsWubbe JohnPeterMary NGO EPPOSIEUDIPPADocSWISS SwitzerlandYngwe Monica Other EuroHealthNet BelgiumZeegersPaget Dineke NGO EuropeanPublicHealthAssociation Netherlands

second forum of the scientific panel for health ‘health ......second forum of the scientific panel...

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