1. Organization and guideline development April 2010 ACCC The Netherlands

2. Content Organization ACCC Guideline development cycle Patient involvement Grading recommendations Implementation Oncoline

3. Comprehensive cancer center (CCC) 8 comprehensive Cancer Centres

4. Comprehensive cancer center (CCC) Goal To provide cancer patients and their families access to comprehensive and high-quality care as close to home as possible. Organisation –All hospitals, radiological centres and pathology labs are affiliated to one particular centre. –Each CCC is associated with five to twenty hospitals.

5. Association of comprehensive cancer Centers (ACCC) (VIKC=ACCC)

6. Association of Comprehensive Cancer Centres (ACCC) Nationally, CCC work together within the ACCC National programmes are Guidelines for diagnosis, treatment and care The Netherlands Cancer Registry Organisation and quality of oncological care Palliative care Other Rehabilitation Evaluation of screening activities Support of clinical trials Education and information National Cancer Control Programme

7. The ACCC fulfills nationally a coordinating function in oncological and palliative care.

8. Guideline development in 7 steps 1. Choice of topic and scope 2. Preparation 3. Development of concept guideline 4. Consultation 5. Authorisation 6. Dissemination and implementation 7. Evaluation, updating and revision

9. Step 1 Choice of topic and scope Result = Relevant and clearly defined key questions, generated from a representative multidisciplinary analysis of problem areas multidisciplinary survey of problem areas is sent to all professionals in relevant fields to identify problem areas –Is first component of implementation A patient version of the survey is sent to patient organisations

10. Step 2 Preparation Results A working group composing necessary expertise and with sufficient endorsement from relevant scientific, professional, and patient organisations (mandated) Ensuring that qualitatively adequate and affordable methodological support is available A clear, concise, and complete project plan Formulated key clinical questions

11. Step 3 Development of draft CPG Literature search Selecting the evidence Critical appraisal Synthesising the evidence –Data extraction, evidence tables in English, level of evidence -> Using CoCanCPG formats Writing draft text: oncoline format

12. Grading of recommendations Recommendations are formulated on the basis of evidence based conclusions and other considerations GRADE is currently not used ACCC started with project ‘grading of recommendations in CPG’s’ –Literature search of existing grading methods –Development of a method for grading of recommendations in CPG’s –Accent on evidence-based conclusion, patient and professional preferences, safety and cost effectiveness –The developed method will be pilot tested in the CPG renal cell carcinoma –After evaluation it might be refined and used in other CPGs

13. Step 4 Consultation Result = Definitive guideline text Submitting draft guideline for review to relevant –scientific societies –professional societies –patient organisations –national tumour working groups

14. Step 5 Authorisation Result = an authorised multidisciplinary evidence- based guideline Written request to authorise the guideline sent to the directors of relevant –scientific societies –professional societies –patient organisations –national tumour working groups

15. Step 6 dissemination and implementation Guideline available on Oncoline E-mailing to -Professional and scientific societies -National and regional tumour working groups -Personalized email alert to guideline users / professionals Publishing a news report on -Oncoline/Pallialine -iKCNet (the website of the ACCC) -Websites of professional and scientific societies Publication in journals / scientific magazines –e.g. Dutch Journal of Medicine (NTvG), Oncologica Summary cards Translation of guideline in English

16. Step 6 dissemination and implementation How do we implement guidelines? IDuring the development of the guideline using the network IIOncoline and Pallialine, the websites for guidelines of oncological and palliative care IIIActivities of the CCC’s and implementation projects

17. Implementation 1 Guideline implementation during development Participation of scientific, professional and patient societies National tumor working group Regional tumor groups via the CCC’s Step 1: analysis of problem area’s to create clinical questions Step 2: recruiting experts to participate in the guideline Step 3: informing about the method Step 4: sending a first draft for feedback Step 5: sending a second draft for approval

18. Implementation 2 Oncoline

20. Implementation 3 Activities of the CCC’s CCC’s organise educational tools to implement guidelines Consultancy services Symposia Meetings Courses for oncology care providers Webcasts with accreditation points Break-through projects

21. Implementation 3 Consultancy services Oncologists from oncological centres Advice medical specialists on actual guidelines Take part in oncology meetings in hospitals Offer mentor-surgery, workshops and video- conferencing. Furthermore: nurses, paramedics, psychosocial, epidemiological and palliative care consultants

22. Implementation 3 Breakthrough projects Changes in actual care are implemented in hospitals based on the CPG Teams in different hospitals are monitoring their achievements Working conferences: results/experiences are presented and compared Team of experts help hospitals to improve 2 projects: –Mamma carcinoma –Non-small cell long carcinoma

23. Guideline development in 7 steps 1. Choice of topic and scope 2. Preparation 3. Development of concept guideline 4. Consultation 5. Authorisation 6. Dissemination and implementation 7. Evaluation, updating and revision

24. Step 7 Evaluation, updating and revision 1 Evaluation using indicators for the most important recommendations Prospective documentation projects in at least 2 CCC’s using the Netherlands Cancer Registry The ACCC is involved in the development and maintenance of indicators in cancer CPG’s initiated by the Dutch government

25. Conditions for revision and literature monitoring are established in the guideline. These are monitored by the national working group or another committee mandated by the guideline working group. The guideline duration of validity (maximum 5 years after approval) is monitored by the ACCC programme office. -> Cycle starts again Step 7 Evaluation, updating and revision 2

26. Questions?