RWE4Decisions Webinar: Clinical Teams’ Role in Real-World Data Generation for Healthcare Payers’ Decision-Making

Dr. Karen Facey worked as a statistician in the pharmaceutical sector and UK medicines regulation, before becoming founding Chief Executive of the first national HTA agency in Scotland. Since 2003, Karen has been an independent HTA consultant with special interests in RWD, rare diseases and patient involvement. She is passionate about holistic HTA to determine value and use of health service data to improve patient care. Karen also works with the University of Oxford as a Senior HTA Advisor in the IHI Guidelines for RWE Generation project and with Utrecht University in the SUSTAIN HTA Coordinating Support Action.

Dr. Karen Facey worked as a statistician in the pharmaceutical sector and UK medicines regulation, before becoming founding Chief Executive of the first national HTA agency in Scotland. Since 2003, Karen has been an independent HTA consultant with special interests in RWD, rare diseases and patient involvement. She is passionate about holistic HTA to determine value and use of health service data to improve patient care. Karen also works with the University of Oxford as a Senior HTA Advisor in the IHI Guidelines for RWE Generation project and with Utrecht University in the SUSTAIN HTA Coordinating Support Action.
Previously, he held the position as COO of EUnetHTA and is considered as one of the key architects of the European HTA system. In addition, in 2017, Marcus created the “Heads of Agency Meeting” which in 2021 led to the formation of the Heads of HTA Agencies Group, where he served as General Manager until 2023. This initiative unites key European HTA decision-makers, creating a forum to discuss and align on major strategic questions relevant to EU HTA agencies.

Matti Aapro is member of the Board of Directors of the Genolier Cancer Center, Genolier, Switzerland and Immediate Past-President of the European Cancer Organisation. Dr. Aapro is Executive Board member of All.Can and President of Sharing Progress in Cancer Care (SPCC), both not-for-profit associations. He serves the International Society for Geriatric Oncology (SIOG) as Executive Board Member. He is past-President of the Multinational Association for Supportive Care in Cancer (MASCC). He continues to collaborate with the European School of Oncology (ESO) where he an Executive member. He is member of the Board of the French-speaking Society for Supportive Care (AFSOS), as well as Advisor to the Japanese Association for Supportive Care in Cancer (JASCC). He has been member of the Board of the European Organization for Research and Treatment of Cancer (EORTC) and of the Board of the European Society of Medical Oncology (ESMO). He received his medical degree from the Faculty of Medicine, University of Geneva, Switzerland and was a fellow at the Arizona Cancer Center in Tucson, Arizona, USA. He was the founding chair of the Medical and Radiation Therapy Department at the European Institute of Oncology in Milan. His main interests are Breast Cancer, Cancer in the Elderly, Supportive care and access to treatment.

Doctor of Medicine (MD, PhD), Sami Pakarinen is a clinician–researcher and cardiologist currently serving as Chief Medical Officer for Clinical Auditing at Helsinki University Hospital (HUS). He has held senior leadership roles at HUS for over two decades, including Physician-in-Chief of Internal Medicine and Senior Consultant in Cardiology.
Dr. Pakarinen has played a key role in national and EU-funded initiatives advancing value-based healthcare, cost-effectiveness, and outcome-driven care, including leadership positions in the EU funded ONCOVALUE project and EU Recovery and Resilience Facility programs. He has long-standing expertise in cardiac rhythm management and rhythm device therapy.
In his current role, he promotes evidence-based practice, transparency, and continuous quality improvement. His responsibilities include real-time data production, analytics, and reporting on the cost-effectiveness of HUS specialized healthcare services and also participation in both hospital-level and national health technology assessment (HTA) processes. He also actively participates in EUHA and NUHA collaboration.

Dr Maria del Mar Mañú-Pereira is the Head of rare anemia disorders research laboratory in translation research group on cancer and blood disorders in children at Vall d'Hebrón Research Intitute. She is also the Scientific Director of the European Reference Network on Rare Hematological Disorders ERN-EuroBloodNet, in charge of the definition and implementation of the network scientific strategy and the relations with the European structures for data sharing and the EC-Joint Research Centre. In this context, she is also the coordinator of its European platform of patients' registries on rare hematological disorders, ENROL, and of Rare Anaemia Disorders European Platform, RADeep. In the field of translational research, she is focused on development of innovative methodologies; X-omics, red blood cell rheology and mechanical properties characterization, microfluidics and organ-on-chip for integrative diagnosis and personalize medicine. In this context, she is principal investigator of European Commission funded projects EVIDENCE, Erythrocytes Properties And Viability In Dependence Of Flow And Extra-Cellular Environment, GENOMED4ALL, Genomics and Personalized Medicine for all though Artificial Intelligence in Haematological Diseases through a European federated learning platform and SYNTHEMA, Synthetic generation of hematological data over federated computing frameworks to further enhance diagnostic capacity, assess treatment options and predict outcomes in rare hematological diseases.