Strasbourg, 13 October 2022 BIO/ENF-CP RAP(2022)3
BIO/ENF-CP Drafting Group
on Developing a Guide to good practice concerning
the participation of children in the decision-making process
on matters regarding their health
3rd meeting (22-23 September 2022, Paris)
MEETING REPORT
1.
I. Opening
- Ms Ritva Halila (CD-BIO, Finland) and Mr Joost Van Haelst (CDENF, Belgium), co-Chairs of the BIO/ENF-CP Drafting Group, opened the meeting thanking members of the group for their interest and participation, and specifying that this session would be chaired by Ms Ritva Halila, as previously agreed. The Chair reminded the Drafting Group about the objectives of the meeting, namely 1) to discuss the draft guide, which the consultant had revised in the light of the comments and examples received by the CD-BIO and CDENF delegations, and 2) plan the stakeholders’ and children’s consultations.
II. Adoption of the Agenda
2. The drafting group adopted the agenda for this meeting as it appears in Appendix II to this report.
III. Discussion on the revised draft of the Guide to good practice concerning the participation of children in the decision-making process on matters regarding their health
3. The consultant presented the revised version of the draft Guide (BIO-INF/CP (2022) 1REV) and put forward a number of pending questions. The members of the drafting group commented on the text and proposals as the presentation progressed.
4. Regarding terminology, it was decided that “children” was the preferable term. “Minor” will therefore only appear when quoted in specific legislation. The glossary at the end of the document will be kept but with slight amendments.
5. Regarding the visual aspect of the draft, it was noted that the colour code used in the document (yellow for examples, red for special focus) was temporary and the final version should be easily readable when printed in black and white. As previously agreed, a diagram (Hart’s ladder of participation) illustrating the different levels and stages of child participation will be included.
- With regard to the relevance of examples, it was recalled that the group had previously agreed that the scope of the Guide focuses on individual decision-making processes. Selected examples should therefore reflect this. Examples of relevant collective initiatives can remain/be included in the text, in so far as these contribute to improving the conditions of individual decision-making. When the link between collective and individual levels is not self-evident, it should be more clearly explained in the presentation of examples.
- Members of the drafting group reflected on a comment from a delegation which questioned the relevance and/or applicability of the guide’s principles/guidelines in times of emergency. The members of the Group agreed that the Guide needs to clearly affirm the necessity to apply child participation principles in times of emergencies, to the extent feasible.
- The members acknowledged the need for a conclusion to the Guide but decided that it would be drafted after the consultation process.
9. It was recalled that when the draft is finalized, some sections will be highlighted to “stand out”, especially for the web version of the Guide. Until then, the “Remember” sections will be removed or placed elsewhere in the text (when the information is not, in fact, a repetition).
10. A reference will be included regarding the additional challenges posed by emerging technologies, but these will not be developed in detail in the text.
11. The annexe to the Guide will be removed, on the basis that the focus is placed on practice, not legislation. Some of the elements present in the current annexes could be made available as additional information via the webpage.
12. Some limited editorial work will be carried out before the consultation process (English language check and inclusion of hyperlinks) but should not delay the launch.
IV. Consultation process
13. The draft Guide will be submitted to relevant stakeholders and to children (children’s groups), to gather additional suggestions to improve the Guide.
14. Both consultations will take place between 10 October and 18 November 2022.
15. The consultation of stakeholders will be launched on 10 October.
16. Feedback will be collected via an online questionnaire (7 questions, including: does the guide reach its objective(s)? Is the language appropriate? Anything to add or delete? Appropriate diversity of examples? Further examples to provide? Any other comment?)
17. The Secretariat will send out the draft Guide to a list of identified stakeholders. To this end, the drafting group agreed on the content of an introductory letter.
18. Delegations will be invited to disseminate the draft guide to relevant national stakeholders (a list of possible national stakeholders to consult will be provided to them).
19. In parallel, the draft Guide will be submitted to children’s groups. The objective is to gather their opinion regarding the relevance of the topics dealt with in the Guide. Given the time constraints, the consultation will target children who are already part of existing advisory bodies. To this end, the consultant will disseminate the draft Guide within the TEDDY network, while other members of the drafting group may share with other groups whom they know well. The methodology used for this specific consultation was discussed, including the tools which will be required (existing video, leaflet and short questionnaire to be developed). It was agreed that the consultant will take the lead in this process.
V. Closing the meeting – Next steps
20. The BIO/ENF-CP Drafting Group agreed to hold a meeting shortly after the end of the consultation meeting, on 7 December 2022 (online) and then on 26-27 January 2023 (online) to work on a revised version of the draft Guide.
21. The updated timeline for the development of the Guide appears in Appendix III.
List of participants
Drafting group members
Finland
Ritva HALILA, MD, Ph.D, Chair
Chair of CDBIO
Senior Medical Officer, Ministry of Social Affairs and Health
Belgium
Joost VAN HAELST Chair
Member of the CDENF Bureau
Policy Officer Children's Rights, Department for Culture, Youth and Media
Flemish Government
France
Stefania CHIRU Apologised
Policy Officer
European and International Affairs Office
Directorate-General for Social Cohesion
Ministry of Solidarity and Health / Delegate Ministry for Equality f/h
Sweden
Tesi ASCHAN Apologised
Legal Adviser
The National Board of Health and Welfare, Socialstyrelsen
Independent Expert
Andrew CLARKE
Senior Health Advisor for Save the Children UK, United Kingdom
Consultant
Annagrazia ALTAVILLA, Chair of TEDDY, European Network of Excellence for Paediatric Research
SECRETARIAT
Directorate General I – Human Rights and Rule of Law
Human Rights and Biomedicine Division
Laurence LWOFF, Head of Human Rights and Biomedicine Division, Secretary of the CDBIO, +33 (0) 388 41 22 68, [email protected]
Aurélie Pasquier, Administrator, +33 (0) 390 21 52 75, [email protected]
Directorate General II – Directorate General of Democracy
Children’s Rights Division
Ana Isabel GUERREIRO, Administrator, [email protected]
Appendix II
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THURSDAY 22 SEPTEMBER 2022 |
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09.30 – 09.50 CET |
Opening of the meeting Ms Ritva Halila, DH-BIO Chair, Chair of BIO/ENF-CP, Mr Joost Van Haelst, CDENF Bureau member, Chair of BIO/ENF-CP Ms. Laurence Lwoff, Head of Bioethics Unit, Secretary of the Committee on Bioethics (DH-BIO) of the Council of Europe Ms Ana Guerreiro, Administrator, Children Rights Division |
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09.50 – 10.00 |
Adoption of the agenda BIO-ENF/CP (2022)OJ2 |
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10.00 – 10.20 |
Presentation of the draft Guide to good practice concerning the participation of children in the decision-making process on matters regarding their health, revised in the light of the comments received from delegations in CDBIO and CDENF Ms Annagrazia Altavilla, consultant to the Secretariat |
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10.40 – 12.00 |
Discussion on the revised Guide - Revised draft - Examples included |
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12.00 – 13.30 |
Lunch break |
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13.30 – 15.00 |
Discussion on the revised Guide (to continue where necessary) - Revised draft - Examples included |
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15.20 – 17.00 |
Organisation of the consultations Doc. BIO-ENF/CP (2022)2 Rev4 Stakeholders consultation · Selected stakeholders · Consultation process · Timeline |
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FRIDAY 23 SEPTEMBER 2022 |
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09.30 – 12.30 CET |
Organisation of the consultations (to continue) Doc. BIO-ENF/CP (2022)2 Rev4 Stakeholders’ consultation · Selected stakeholders · Consultation process · Timeline Children’s consultation · Consultation process · Timeline |
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12.30 – 13.00 |
Concluding remarks: · Main conclusions of the meeting of the drafting group · Next steps to be taken · Date of the fourth meeting of the drafting group |
Appendix III
Timeline
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BIO/ENF -CP |
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CDBIO CDENF |
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Consultation |
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Consultant / Secretariat |
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Milestone |
Content |
Date |
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First meeting of BIO/ENF-CP |
Exchange on the draft outline, agreement on the methodology, timeline and organisation of the work |
29 November 2021 |
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Consultant/Secretariat prepare a first draft guide |
Based on guidance received from BIO/ENF-CP |
February 2022 |
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Second meeting of BIO/ENF-CP (1 [1.5] days) |
Examination of the draft guide, identification of examples, agreement on the modalities for child- and stakeholder consultation |
[10 (afternoon)]-11 March 2022 Strasbourg, online |
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Consultant/Secretariat revise the first draft |
Revision in the light of the discussion at the 2nd meeting of the BIO/ENF CP |
06 April 2022 |
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BIO/ENF-CP |
Comments by the Drafting Group before sending the draft to the Committies |
20 April 2022 |
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5th Plenary meeting of the CDENF (online) |
Update on the state of play of the work |
18 -19 May 2022 |
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1st Plenary meeting of the CDBIO |
Update on the state of play of the work |
31 May - 3 June 2022 |
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Written comments requested from CDBIO and CDENF Delegations on the first draft and on concept notes of the consultation processes (children and stakeholders) |
20 June 2022 |
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Consultant/Secretariat revises and complements the draft Guide |
Revision based on - guidance from CDBIO and CDENF - examples received |
End of August 2022 |
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3rd meeting of BIO/ENF-CP (2 days) |
Examination and agreement on the revised draft |
22-23 September 2022 |
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Consultant/Secretariat revise the draft |
Revision in the light of comments received from BIO/ENF-CP |
01 October 2022 |
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Stakeholders Consultation Process |
Written consultation of selected stakeholder representatives |
10 October – 18 November 2022 |
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Children Consultation Process |
Consultation of a representative group of children |
10 October – 18 November 2022 |
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2nd plenary meeting of the CDBIO |
Update on the draft Guide |
2-4 November 2022 |
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6th plenary meeting of the CDENF |
Update on the draft Guide |
15-17 November 2022 |
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4th meeting of BIO/ENF-CP (0.5 day) |
Preliminary discussion on the outcomes of the consultation process. Organisation of the revision process |
7 December 2022 |
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Consultant/Secretariat revise the draft |
Revision of the draft, in light of the comments received from the consultation with stakeholders/children |
End of December 2022 |
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5th meeting of BIO/ENF-CP (1.5 days) |
Examination of, and agreement on the revised draft |
26-27 January 2023 |
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Joint Bureau meeting CDBIO/CDENF |
Examination of the draft in view of its presentation to the parent Committees |
February 2023 (TBC) |
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3d plenary meeting of the CDBIO 7th plenary meeting of the CDENF |
Examination of the final version of the draft Guide by CDBIO and CDENF plenaries with a view to its adoption. |
CDENF: 28 – 30 March 2023 CD-BIO: 4-6 June 2023 |
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4th plenary meeting of the CDBIO 8th plenary meeting of the CDENF |
Final examination and adoption of the Guide by CDBIO and CDENF plenaries |
Autumn 2023 |