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Survey to National Competent Authorities in EU Interactions with patients and consumers An agency of the European Union Presented by Maria Mavris November 26, 2015 Introduction Concept of survey presented by Isabelle Moulon (EMA) in


  1. Survey to National Competent Authorities in EU Interactions with patients and consumers An agency of the European Union Presented by Maria Mavris November 26, 2015

  2. Introduction • Concept of survey presented by Isabelle Moulon (EMA) in December meeting with WGCP* in Rome and approved • Draft survey (in word) circulated to PCWP and WGCP for comments prior to finalising questions – comments incorporated • Survey shared (via surveymonkey link) mid February 2015 • Deadline for submissions 20 March 2015 • Results collected and collated * Working Group of Communication Professionals 1

  3. Outline of survey • Involvement of patients in Agency activities • Types of patient’/consumer’ groups • Types of activities they are involved in • Requirements for interacting with your Agency • Reimbursement? • Factors resulting in success or hindrance of interactions • Future plans by Agency 2

  4. Which countries completed the survey? Czech Republic Liechtenstein • • Denmark Lithuania • • Finland Romania • • Germany Slovakia • • Greece Spain • • Hungary The Netherlands • • Ireland United Kingdom • • Portugal • 3

  5. Interactions with patients? And how did they begin? 4

  6. Which group(s) of patients do you involve? 5

  7. What kinds of activities has your Agency collaborated on with patients? 6

  8. Does your Agency have any criteria for individuals, patients or consumers? 7

  9. Do you feel that patient/consumer involvement has been beneficial to the Agency? 8

  10. What factors have or would have contributed to a successful interaction? 12 10 8 6 4 2 0 NCA policy on patient Valuable real life experience mutual trust understanding of regulation training programme compensation (eg travel) ongoing involvement (e.g. public with the disease and/or science communication/commitment hearings) your authority the patient groups both 9

  11. What factors have or would have hindered interactions? 10

  12. Agencies that do not involve patients/consumers in their work • Each agency that did not involve patients – did have some contact with them • Disseminated information to them • Did not have future plans to involve them 11

  13. Conclusions • Almost all Agencies felt involving patients was beneficial to their work • Different Agencies at different stages /need for these interactions • General awareness that more mutual trust, understanding of regulation, resources and experience are needed to build these relationships • Shared with the working group of communication professionals of the Heads of Medicines Agencies by Juan Garcia (June 2015) 12

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