• Share
  • Email
  • Embed
  • Like
  • Save
  • Private Content
Workshop 6 - "Sharing expertise: transfer of experience from patient organizations to doctors and between patient organisations"
 

Workshop 6 - "Sharing expertise: transfer of experience from patient organizations to doctors and between patient organisations"

on

  • 711 views

Workshop 6 - Brainstorming & Policy Development session: Training, information and education of MDs ...

Workshop 6 - Brainstorming & Policy Development session: Training, information and education of MDs
"Sharing expertise: transfer of experience from patient organizations to doctors and between patient
organisations"
Rainald von Gizycki, Retina Europe,
Germany

Statistics

Views

Total Views
711
Views on SlideShare
525
Embed Views
186

Actions

Likes
0
Downloads
1
Comments
0

3 Embeds 186

http://www.eurordis.org 180
http://stars.eurordis.org 5
url_unknown 1

Accessibility

Categories

Upload Details

Uploaded via as Microsoft PowerPoint

Usage Rights

© All Rights Reserved

Report content

Flagged as inappropriate Flag as inappropriate
Flag as inappropriate

Select your reason for flagging this presentation as inappropriate.

Cancel
  • Full Name Full Name Comment goes here.
    Are you sure you want to
    Your message goes here
    Processing…
Post Comment
Edit your comment

    Workshop 6 - "Sharing expertise: transfer of experience from patient organizations to doctors and between patient organisations" Workshop 6 - "Sharing expertise: transfer of experience from patient organizations to doctors and between patient organisations" Presentation Transcript

    • Sharing Expertise: Transfer of Experience from Patient Organisations to Doctors and Between Patient Organisations Dr. Rainald von Gizycki, Charité clinics Berlin / Retina Europe
    • Overview of slides
      • Background
      • The Project
      • Transfer of experience
      • Transfer from PO to Doctors
      • Cooperation of PO with doctors
      • What transfer activities with doctors are PO involved in?
      • PO with highest transfer experience
      • Conclusions Phase I
      • Transfer of experience between PO
      • Phase II: Supported educational training of PO
      • Three-step methodology
      • Toolbox for transfer between PO
      • Objectives of Transfer Circles
      • Existing transfer circles
      • Major transfer obstacles
      • Conclusions
    • The Project
      • Title: „Contribution of Patient Organisations to Education of Doctors“
      • (2009 - 2011)
      • Sponsor: German Federal Ministry of Health
      •  
      • Objective Phase 1:
      • Survey of Educational Activities of Member Organisations of German
      • Rare Disease Umbrella Organisation (ACHSE)
      • Methodology : E-Mail Questionnaire sent to 90 member organisations
      • High response rate of 59% (53 PO)
      •  
      • Objective Phase 2:
      • Support of doctor-related educational activities of Patient
      • Organisations (PO) by transfer of tools
    • Transfer of experience
      • PO are close to needs of RD patients
      • PO are familiar with deficits of medical care
      • PO therefore transfer experience to doctors
      • - PO need effective utilisation of scarce resources
      • Educational tools of one PO can be used by
      • other POs
      • PO therefore transfer experience to other PO by adapting existing tools
    • Cooperation of PO with doctors
      • Survey results:
      • Close cooperation: 37 (72 %)
      • Occasional cooperation: 12 (21 %)
      • No cooperation: 1 (2 %)
      • No answer: 3 (5%9
      • Hence:
      • Nearly all PO cooperate with doctors
      • Medical advisory boards play important role
      • excellent platform for educational activities and for transfer of experience to the medical community
    • What transfer activities with doctors are PO involved in?
      • Activities of PO related to continuous education of
      • doctors (CME) (ranked according to frequency):
      • Posters and information stands at educational events (58 %)
      • Presentations at educational meetings (51 %)
      • Dissemination of information material to doctors (49 %)
      • Articles in medical journals (47 %)
      • Cooperation with associations of doctors (30 %)
    • PO with highest transfer experience
      • Deutsche Selbsthilfe angeborene Immundefekte e.V. (Hereditary immune defects)
      • Interessengemeinschaft Sichelzellkrankheit und Thalassämie e.V. (Thalassemia)
      • Bundesverband Neurofibromatose e.V. (Neurofibromatosis)
    • Conclusions Phase I
      • Most PO participate in activities to share their expertise with medical doctors
      • There are significant differences between PO in the scope and degree of involvement in medical education
      • Differences of involvement depend on structure of PO as well as focus of interests
    • Phase II: Supported educational activities of PO
      • Focus 1: lectures and presentations
      • CME: 4,2 (51 % (27) of PO involved)
      • MTS: 2,9 (45 % (24) of PO involved)
      • Focus 2: educational events
      • Annual educational events: 21 out of 27 annual events include doctors and other health-related professionals as target groups (conferences, patient days, workshops etc.)
    • Three-Step Methodology
      • Project Contact:
      • Personal contacts and survey results provide platform for first exchange of activity related information with project
      • Mediated Transfer:
      • Existing activity related aids of one PO are transferred and adapted to another PO with project support (e.g. presentation papers)
      • Direct Transfer:
      • Mutual activity-related interaction between PO (with and finally without project support)
    • Toolbox for educational activities of PO
      • Lecture package for medical students and doctors
      •  Umbrella presentation
      •  Disease-specific presentations
      •  Lecture patients
      •  Videos and films
      • Support package for educational events
      •  Three examples of events
      •  Instructions for certifications of events
      •  Evaluation tools
      • v
    • Objectives of Transfer Circles
      • Learn about activities of other PO in areas of mutual interest
      • Avoid duplications
      • Save scarce resources
    • Existing transfer circles
      • TC 1: Lecture package for medical students and doctors
      • Active PO:
      •  Video: 5
      •  Presentations: 4
      •  Lecture patient: 1
      • Passive PO: 4
      • TC 2: Support package for educational events
      • Active PO:
      • Evaluation questionnaire: 4
      • Passive PO: 2
      • TC 3: Bylaws and regulations concerning training, further training and continuous medical education
      • - TC not yet established, tools in preperation
    • Major Transfer Obstacles
      • Competition between PO (for resources, awareness, media etc.)
      • Lack of interest in other diseases / PO
      • Different structures, strategies, values
      • Lack of personnel to adapt transferred aids and implement new activities
    • Conclusions
      • PO have developed numerous educational tools for doctors and medical students
      • High unfulfilled demand for educational tools due to resource deficits
      • Invisible exchange networks between PO strengthened by transfer circles
      • Most obstacles to transfer circles can be overcome
      • Future objective: establishment of an “open marketplace” for exchange of educational aids and activities based on toolbox