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The European Patients’ Academy includes a multidisciplinary Project Advisory Board, a Regulatory Advisory Panel and an Ethics Panel comprising renowned experts who provide us with independent and objective advice to maintain strong governance.

Project Advisory Board

The Project Advisory Board (PAB) includes people with experience in patient involvement and/or pharmaceutical research and development. Members of the PAB are experts in bioethics, patient advocacy, biomedical research, personalized and predictive medicine (the probability of disease based on genetics), evidence-based medicine, clinical trials, genetics, chronic disease management, pricing and cost controls (HTA), drug safety including side effects and health science communication.

Members of the PAB are:

  • Kathy Oliver, Patient advocate, Director of the International Brain Tumour Alliance (IBTA), UK (Co-Chair of the PAB)
  • Prof. Jean-Jacques Cassiman, Head of the Centre for Human Genetics, Catholic University of Leuven, Belgium (Co-Chair of the PAB)
  • Dr. Vincenzo Costigliola, President, European Medical Association, Brussels, Belgium
  • Dr. Karen Facey, HTAi Interest Group for Patient/Citizen Involvement, UK
  • Prof. Jozef Glasa, Professor of Clinical Pharmacology & Therapeutics, Hepatology and Medical Ethics/Bioethics at the Slovak Medical University in Bratislava, Slovakia
  • Dr. Ingvil Sæterdal, Senior Researcher at the Norwegian Knowledge Centre for the Health Services, Norway, and EUNETHTA WP2 Project Manager
  • Peter O'Donnell, Associate Editor, European Voice, Brussels, Belgium
  • Prof. Munir Pirmohammed, Department of Health, Chair of Pharmacogenetics, University of Liverpool, UK
  • Ysbrand Poortman, Patient advocate, Vice President of the World Alliance of Organizations for the Prevention and Treatment of Genetic and Congenital Conditions (WAO, The Hague)  and Secretary General  of the International Genetic Alliance of Parent & Patient Organisations (IGA, Washington)
  • Dr. Britta Lang, MSc, Senior Researcher, the Cochrane Collaboration, Cologne, Germany
  • Anke Steckelberg, EBM Expert, University of Hamburg, Germany
  • Victoria Thomas, Head of Patient and Public Involvement Programme, National Institute for Health and Clinical Excellence, UK
  • Dagmar Friese, Federal Ministry of Health, Germany, Head of Division “Biotechnological Innovation, Nanotechnology and Genetic Engineering”, Directorate General "Drugs, Medical Devices, Biotechnology"

Roles and responsibilities of the PAB include:

  • Providing expertise and advice on scientific and technical aspects
  • Identifying critical paths to project success and potential risks
  • Advising on non-European research programmes and potential opportunities for collaboration
  • Providing expert counsel on the dissemination of outcomes to the patient, scientific and policy communities

 

Regulatory Advisory Panel

The Regulatory Advisory Panel (RAP) includes people with experience in medicines regulation, including policies on information to patients.

Members of the RAP are:

  • Birka Lehmann, Dir. and Prof, Alternate: Dr. Anne-Isabel Roth, Clin. Assessor, BfArM
  • Isabelle Moulon, Head of Medical Information Sector, Alternate: Juan Garcia Burgos, Head of Public Information and Stakeholder Networking, EMA
  • Dr. June Raine, Director of Vigilance Risk Management of Medicines (VRMM); Alternate:  Jan MacDonald, Head Patient Information Quality, MHRA
  • Cordula Landgraf, Head of Networking, Swissmedic
  • Luca Pani, Director General, Italian Medicines Agency (AIFA)

Roles and responsibilities of the RAP include:

  • Providing expertise and advice on regulatory issues
  • Reviewing our information balance and independence
  • Ensuring adherence to the 'Core Quality Principles of information to patients on diseases and treatment options'

 

Ethics Panel

The Ethics Panel includes people with experience in ethics, law and patient advocacy. The "EUPATI Ethical Framework" covers aspects such as anonymity, confidentiality, informed consent, social research, ethical review, professional integrity and publication ethics.

Members of the Ethics Panel are:

  • Andrea Heckenberg, Co-Leader of EUPATI Ethics Panel, Austria
  • Inez de Beaufort, Co-Leader of the Ethics Panel; Ethicist, The Netherlands
  • Cees Smit, Policy advisor of EGAN, The Netherlands
  • Anastassia Negrouk, EORTC, Belgium
  • Claudio Castegnaro, Patient Representative / Fondazione Paracelso Onlus
  • Tanja Krones, Clinical Ethics, University of Zürich
  • Pedro Montellano, Patient Representative
  • Frank Wells, Ethicist, past chair and honorary member of EUPATI Ethics Panel
  • Bob Wilffert, Rijksuniversiteit Groningen

Roles and responsibilities of the Ethics Panel include:

  • providing expertise and advice on ethical aspects (ie, good and bad patient-related behaviour in regard to the drugs development process)
  • determining requirements for communication to patients
  • establishing ethical positions in areas such patient-centred healthcare, development of personalised medicine, development of gene therapy and access to treatment
  • defining guiding principles and how to act and work according to our "Ethical Framework"