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The European Cancer Patient’s Bill of Rights, update and implementation 2016
  1. Mark Lawler1,2,
  2. Ian Banks2,3,4,
  3. Kate Law2,
  4. Tit Albreht5,
  5. Jean-Pierre Armand6,
  6. Mariano Barbacid7,
  7. Michèle Barzach8,
  8. Jonas Bergh9,
  9. David Cameron10,
  10. Pierfranco Conte11,
  11. Filippo de Braud12,
  12. Aimery de Gramont13,
  13. Francesco De Lorenzo14,15,
  14. Volker Diehl16,
  15. Sarper Diler17,
  16. Sema Erdem18,
  17. Jan Geissler19,20,
  18. Jola Gore-Booth21,
  19. Geoffrey Henning21,
  20. Liselotte Højgaard22,23,
  21. Denis Horgan24,
  22. Jacek Jassem25,
  23. Peter Johnson26,27,
  24. Stein Kaasa28,
  25. Peter Kapitein29,
  26. Sakari Karjalainen30,31,
  27. Joan Kelly31,32,
  28. Anita Kienesberger33,
  29. Carlo La Vecchia34,
  30. Denis Lacombe35,
  31. Tomas Lindahl36,
  32. Bob Löwenberg37,
  33. Lucio Luzzatto38,39,
  34. Rebecca Malby40,
  35. Ken Mastris41,
  36. Françoise Meunier35,
  37. Martin Murphy42,
  38. Peter Naredi43,44,
  39. Paul Nurse36,
  40. Kathy Oliver45,
  41. Jonathan Pearce46,
  42. Jana Pelouchov15,
  43. Martine Piccart47,
  44. Bob Pinedo48,
  45. Gilly Spurrier-Bernard49,
  46. Richard Sullivan50,
  47. Josep Tabernero51,
  48. Cornelis Van de Velde52,
  49. Bert van Herk44,53,
  50. Peter Vedsted54,
  51. Anita Waldmann55,
  52. David Weller56,
  53. Nils Wilking57,58,
  54. Roger Wilson59,
  55. Wendy Yared31,
  56. Christoph Zielinski60,61,
  57. Harald zur Hausen62,
  58. Thierry Le Chevalier2,63,
  59. Patrick Johnston1,2,
  60. Peter Selby2,4
  1. 1 Queen's University Belfast, Belfast, UK
  2. 2 European Cancer Concord, Leeds, UK
  3. 3 European Men’s Health Forum, Brussels, Belgium
  4. 4 University of Leeds, Leeds, UK
  5. 5 Institut za varovanje zdravja Republike Slovenija, Ljubljana, Slovenia
  6. 6 Gustave Roussy, Villejuif, France
  7. 7 Experimental Oncology, Molecular Oncology Programme, Centro Nacional de Investigaciones Oncológicas (CNIO), Madrid, Spain
  8. 8 IHU Strasbourg Board of Trustees, Strasbourg, France
  9. 9 Department of Oncology-Pathology, Karolinska Institutet, Stockholm, Sweden
  10. 10 Edinburgh Cancer Centre, University of Edinburgh, Edinburgh, UK
  11. 11 Istituto Oncologico Veneto, Padova, Italy
  12. 12 Medical Oncology Division, National Cancer Institute, Milan, Italy
  13. 13 Department of Oncology, Institut Hospitalier Franco-Britannique, Levallois-Perret, France
  14. 14 Italian Federation of Volunteer-based Cancer Organizations, Rome, Italy
  15. 15 European Cancer Patient Coalition, Brussels, Belgium
  16. 16 Internal Medicine, Universitat zu Koln, Koln, Germany
  17. 17 Myeloma Patients Europe, Istanbul, Turkey
  18. 18 Europa Donna, Milan, Italy
  19. 19 Leukemia Patient Advocates Foundation, Berne, Switzerland
  20. 20 European Patients Academy on Therapeutic Innovation, Riemerling, Germany
  21. 21 EuropaColon, London, UK
  22. 22 Danmarks Grundforskningsfond, Kobenhavn, Denmark
  23. 23 Faculty of Health and Medical Sciences, Kobenhavns Universitet, Kobenhavns, Denmark
  24. 24 European Alliance for Personalised Medicine, Brussels, Belgium
  25. 25 Department of Oncology and Radiotherapy, Medical University of Gdansk, Gdansk, Poland
  26. 26 Department of Medical Oncology, University of Southampton, Southampton, UK
  27. 27 Cancer Research UK, London, UK
  28. 28 Institute of Cancer Research and Molecular Medicine, Norges teknisk-naturvitenskapelige universitet, Trondheim, Norway
  29. 29 Inspire2Live, Amsterdam, The Netherlands
  30. 30 Syopajarjestot, Helsinki, Finland
  31. 31 Association of European Cancer Leagues, Brussels, Belgium
  32. 32 Irish Cancer Society, Dublin, Ireland
  33. 33 Austrian Childhood Cancer Organisation, Vienna, Austria
  34. 34 Department of Clinical Sciences and Community Health, Universita degli Studi di Milano, Milano, Italy
  35. 35 European Organisation for Research and Treatment of Cancer, Brussels, Belgium
  36. 36 Francis Crick Institute, London, UK
  37. 37 Department of Hematology, Erasmus University Medical Center, Rotterdam, The Netherlands
  38. 38 Muhimbili University of Health and Allied Sciences, Dar es Salaam, Tanzania
  39. 39 Universita degli Studi di Firenze, Firenze, Italy
  40. 40 School of Health and Social Care, London South Bank University, London, UK
  41. 41 Europa Uomo, Antwerp, Belgium
  42. 42 European Cancer Concord, Society for Translational Oncology, Durham, North Carolina, USA
  43. 43 Goteborgs Universitet, Goteborg, Sweden
  44. 44 European Cancer Organisation, Brussels, Belgium
  45. 45 International Brain Tumour Alliance, Tadworth, UK
  46. 46 Lymphoma Association, Aylesbury, UK
  47. 47 Institut Jules Bordet, Bruxelles, Belgium
  48. 48 VuMC Cancer Center, Amsterdam, The Netherlands
  49. 49 Melanoma Patient Network Europe, Paris, France
  50. 50 Institute of Cancer Policy, Kings Health Partners Integrated Cancer Centre, London, UK
  51. 51 Vall d'Hebron University Hospital and Institute of Oncology (VHIO), Universitat Autònoma de Barcelona, Barcelona, Spain
  52. 52 Department of Surgery, Leids Universitair Medisch Centrum, Leiden, The Netherlands
  53. 53 Spaarne Gasthuis, Amsterdam, The Netherlands
  54. 54 Institute for Public Health and Department of Clinical Medicine, Aarhus Universitet, Aarhus, Denmark
  55. 55 Leukaemiehilfe RHEIN-MAIN, Rüsselsheim, Germany
  56. 56 Centre for Population Health Sciences, University of Edinburgh, Edinburgh, UK
  57. 57 Department of Oncology, Karolinska Institutet, Stockholm, Sweden
  58. 58 Skåne University Hospital, Lund, Sweden
  59. 59 Sarcoma Patients EuroNet EV, Bad Nauheim, Germany
  60. 60 Comprehensive Cancer Center and Department of Medicine I, Medical University of Vienna, Vienna, Austria
  61. 61 European Society for Medical Oncology, Lugano, Switzerland
  62. 62 German Cancer Research Centre, University of Heidelberg, Heidelberg, Germany
  63. 63 Institute Gustave Roussy, Paris, France
  1. Correspondence to Professor Peter Selby; P.J.Selby{at}leeds.ac.uk

Abstract

In this implementation phase of the European Cancer Patient’s Bill of Rights (BoR), we confirm the following three patient-centred principles that underpin this initiative:

  1. The right of every European citizen to receive the most accurate information and to be proactively involved in his/her care.

  2. The right of every European citizen to optimal and timely access to a diagnosis and to appropriate specialised care, underpinned by research and innovation.

  3. The right of every European citizen to receive care in health systems that ensure the best possible cancer prevention, the earliest possible diagnosis of their cancer, improved outcomes, patient rehabilitation, best quality of life and affordable health care.

The key aspects of working towards implementing the BoR are:

  • Agree our high-level goal. The vision of 70% long-term survival for patients with cancer in 2035, promoting cancer prevention and cancer control and the associated progress in ensuring good patient experience and quality of life.

  • Establish the major mechanisms to underpin its delivery. (1) The systematic and rigorous sharing of best practice between and across European cancer healthcare systems and (2) the active promotion of Research and Innovation focused on improving outcomes; (3) Improving access to new and established cancer care by sharing best practice in the development, approval, procurement and reimbursement of cancer diagnostic tests and treatments.

  • Work with other organisations to bring into being a Europe based centre that will (1) systematically identify, evaluate and validate and disseminate best practice in cancer management for the different countries and regions and (2) promote Research and Innovation and its translation to maximise its impact to improve outcomes.

  • Cancer outcomes
  • Bill of Rights
  • Cancer Concord

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