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

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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

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

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

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