Practical issues Patient participation in GALEN research

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• Practical issues Patient participation in
  GA²LEN research

• Susanna Palkonen, Executive Officer
• European Federation of Allergy and Airways
• Diseases Patients Association (EFA)
• www.efanet.org

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EFA Objectives Advocacy

• Influencing European Union policy on
• indoor and outdoor air in Europe
• quality (including accessibility) of healthcare
• societal participation of patients
• demand-driven (patient centred) research on
  allergies, asthma and COPD

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EFA Role in GA²LEN

• Dissemination of research findings to patients
• Incorporating patient perspectives into research
  policy

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Interest in Research Prevention Environment

• 2x Primary prevention
• Secondary prevention
• Prevention of asthma
• What could prevent asthma morbidity rising
• 2x Environment in allergy
• 2x Diet in allergy
• Indoor and outdoor air quality
• Workshop participants replies to pre-workshop
  questionnaire on their interest in allergy
• and asthma research

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Interest in Research Allergy

• Non-IgE mediated reactions
• Immunotheraphy
• Allergy vaccination
• 2x Food allergy
• Anaphylaxis
• Food allergy, especially milks for babies and
  school lunches
• Workshop participants replies to pre-workshop
  questionnaire on their interest in
• allergy and asthma research

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Interest in Research Asthma

• 2x Childhood asthma
• Asthma in adults
• 2x Asthma services
• 2x Asthma treatment
• Asthma care
• Severe asthma
• Asthma mechanisms
• Relation between allergy and asthma in childhood
• Rhinitis and asthma
• Connection between asthma and COPD
• Workshop participants replies to pre-workshop
  questionnaire on their interest in
• allergy and asthma research

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Interest in Research Patient centred

• 2x Quality of life
• Patient education
• Patient's involvement
• Communication to patients
• Networking
• Workshop participants replies to pre-workshop
  questionnaire on their
• interest in allergy and asthma research

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Interest

• 13 yes and one maybe
• Workshop participants reply to pre-workshop
  questionnaire on their interest to
• subscribe as patient representatives to GA²LEN
  scientific workpackages

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Job Description

• Commitment to patient-centred research
• Representing the European patient
• Experience in patient representation
• Ability to communicate with researchers, patient
  representatives, policy makers
• Constructive representation of the patient
  perspective in the work package
• English, spoken and written
• Computer skills

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Commitment

• From 15 May 2007 until 31 January 2008
  renewable
• Up to two workpackage meetings
• Responding WP email communication
• Sharing relevant WP information with EFA
  Secretariat and Board
• Actively bringing relevant issues to discussion
  within the patient network
• Reporting regularly (EFA ezine, GA²LEN annual
  reporting -gt EFA Annual Report)
• Keeping a time log book
• Booking ones own travel

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Support

• EFA network of patient representatives in GA²LEN
  WPs
• Ad hoq telephone/Skype conferences of the patient
  network on current topics in WPs
• Presentation on EFA
• EFA Team leader in GA²LEN Secretariat
• Re-imbursement of expenses by the WP

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What Happens Next

• Invitation to subscribe as patient representative
  30 April replies by 11 May
• Selection by EFA Board
• Notification by 15 May
• Letter of introduction to WP leaders

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• Thank You and Welcome.
• www.efanet.org
• www.ga2len.net