ChiLTERN Public Advisory Group Involvement Summary
ChiLTERN Public Advisory Group (PAG) works under the leadership of Prof. Keith Wheatley to involve patients and the public in research activities related to the ChiLTERN grant. The group aims to analyze acceptable risks in clinical trial design, justify the balance between long-term organ toxicity and survival rates, inform the public about research processes, organize meetings with experts, and gather information via social media and questionnaires. The group also produces child-friendly materials to explain drug research and aims to raise awareness about hearing loss post cisplatin treatment.
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ChiLTERN Public Advisory Group PPI Patient and Public Involvement Work Packet 7 of the ChiLTERN grant Under the leadership of Prof. Keith Wheatley Summary on behalf of the team
ChiLTERN PAG terms of the European grant PPI Patient and Public Involvement in the research with the aim of including the Parent, Patient and Public Perspective Ideally leading to: Analysis of acceptable risks that families might be prepared to entertain in clinical trial design where a significant reduction in long term side effects may have to be balanced against small reductions in Event Free Survival (EFS) rates Justifications of the risks and balance between long term organ toxicity and survival ChiLTERN PAG 2
ChiLTERN PAG Initial Aims Invite the public to participate and inform the public about the aims of the group Produce information to aid understanding of the research process and organise meetings together with experts in the field to enable an exchange of information and views Set up public initiated social media via a private website, Facebook page and Twitter account to facilitate sharing of lived experiences and pointers to reliable information Initiate a public led gathering of information from parents/patients on the PHITT through a short online questionnaire ChiLTERN PAG 3
The Invitation This poster was sent to PHITT centres with the request to publicise it in public areas of the Paediatric Oncology unit ChiLTERN PAG 4
Information for the public An A3 poster called The Little Scientist aimed at explaining the science behind new drug research to children A storyboard with pictures and text to be read to the child explain the ChiLTERN project A short 1 minute animated cartoon video explaining ChiLTERN https://youtu.be/6at5WxEKyrY Three short videos in the making to explain hearing loss following cisplatin Nursery age: for parents and staff Primary school age: for parents and staff Secondary school age: for students ChiLTERN PAG 5
ChiLTERN PAG members to date Peppy Brock Liselot Hoornweg Philly Simpkin Olly Simpkin Jawwad Tanvir Maham Tanvir Farzana Kauzir Iwona Dasko-Rejner Willemijn Plieger-van Solkema Jennifer Laidler Steve Baker Raj Dhanda Norihan Mohd-Taib Madhu Dandapani Chairperson Parent Representative - Netherlands Parent Representative UK - London Patient Representative UK - London Parent Representative UK Birmingham Patient Representative UK Birmingham Patient Representative UK - Lancashire Parent Representative UK - Aberdeen Parent Representative - Netherlands PHITT Senior Trial Coordinator PHITT Trial Coordinator ChiLTERN Project Manager ChiLTERN Project Officer PHITT Co-investigator 7 ChiLTERN PAG
1st PAG meeting London November 2019 2 UK parents and 2 UK patients present (1 off photo) 2 EU parents on the phone 2nd PAG meeting Birmingham February 2020 1 UK patient present (off photo) 1 UK patient on the phone 3 UK parents present 1 EU parent present 3rd PAG meeting due Munich March 2020 8 ChiLTERN PAG https://twitter.com/chilterncollab
ChiLTERN PAG Education prior to planning a questionnaire At the first PAG meeting each parent and patient told their story Olly particularly shared about his hearing loss, Philly shared from the parent perspective The team outlined the PHITT trial and we shared the information sheets and synopsis with the parents allowing ample time for discussion We discussed the ChiLTERN video and the story board Prior to the next meeting a trial online questionnaire was sent to all members At the second PAG meeting the newcomers told their story The team outlined their role in the trial We discussed the Little Scientist poster and agreed it should be A3 size Maham told us the research that she had done on information available on cisplatin hearing loss in schools. Maham, Jawwad and Philly discussed what they thought was needed. Peppy gave a talk on the history of SIOPEL, what clinical trials had taught us to date and what the side effects of treatment were. She showed that reducing side effects of treatment was already a hallmark of SIOPEL studies for Hepatoblastoma. She explained the need for more treatment for high-risk disease and hepatocellular carcinoma The parents and patients sat together and looked at potential questions for parents on the PHITT trial. Norihan collated the questions. The aim is to limit the questionnaire to 20 questions ChiLTERN PAG 9
ChiLTERN PAG aim to collect information on parent/patient views on PHITT The parents and patients agreed to questions for an online questionnaire to be handed out via a link given to parents and patients by their oncology team The Birmingham trials team agreed to send the link to PHITT Investigators requesting that they pass the link on to parents The oncology team will not know whether or not the family has filled in the questionnaire Results will be collated anonymously online The online system permits translation into all European languages There will be 20 questions which can be answered by parents or patients All parents can use the link ChiLTERN PAG 10
ChiLTERN PAG future directions 3rd meeting in Munich on 30th March alongside the ChiLTERN meeting Hopefully more European parents/patients will attend A potentially exciting thought would be to arrange a meeting at SIOP in Ottawa together with Momcology and any other interested groups We have the ambition of asking Michael Bubl to be our ambassador. He is coming to England this summer and we have tickets for one of his concerts! Warm greetings to all the parents/patients gathered in Cincinnati! Thanks Bruce for sharing Congratulations on your great initiative Jim 11 ChiLTERN PAG
