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Page 28 Hunter et al. J Transl Genet Genom 2023;7:17-26 https://dx.doi.org/10.20517/jtgg.2022.19

• Keep in touch with PPI participants, both between meetings (e.g., by email) to ensure their continued interest, and immediately after
meetings (offer phone calls to discuss issues that might have been too difficult to bring up in a group, and signposting to independent support
organisations).
• Provide opportunities for the PPI team to co-author papers or co-present research at meetings. Not only does this ensure they are
acknowledged for their role in the study and have some ownership of the results, but it can also support parents/the public to develop new skills.

DECLARATIONS
Acknowledgments
The authors would like to acknowledge all the PPI contributors to the projects discussed.

Authors’ contributions
Led on the concept and drafting of the article: Hunter A
Made substantial contributions to the concept and development of the article: Lewis C, Hill M, Chitty LS,
Leeson-Beevers K, McInnes-Dean H, Harvey K, Pichini A, Ormondroyd E, Thomson K

Availability of data and materials
Not applicable.

Financial support and sponsorship
The research featured in the case studies is supported by the following awards and project grants:
Rapid exome sequencing for the diagnosis of critically ill children in the NHS Genomic Medicine Service:
Ensuring an equitable and effective parent and patient-centred service. NIHR202725 [Available from:
https://fundingawards.nihr.ac.uk/award/NIHR202725]
EXPRESS study: Optimising Exome Prenatal Sequencing Services NIHR127829 [Available from:
https://www.fundingawards.nihr.ac.uk/award/NIHR127829]
The Newborn Genomes Programme is fully funded by Genomics England. Genomics England was
established by and is owned by the Department of Health and Social Care. [Available from:
https://files.genomicsengland.co.uk/documents/Genomics-England-Annual-Report-2020-2021.pdf]
Celine Lewis is funded through an NIHR Advanced Fellowship Grant NIHR300099 [Available from:
https://fundingawards.nihr.ac.uk/award/NIHR300099]
Melissa Hill and Lyn S. Chitty are partially funded by the NIHR Biomedical Research Centre at Great
Ormond Street Hospital. All research at Great Ormond Street Hospital NHS Foundation Trust and UCL
Great Ormond Street Institute of Child Health is made possible by the NIHR Great Ormond Street Hospital
Biomedical Research Centre.
Elizabeth Ormondroyd is funded by NIHR Oxford Biomedical Research Centre.
Kate Thomson’s contribution to the SCARFE project was funded by a NIHR and Health Education England
(HEE) Healthcare Science Doctoral Research Fellowship [NIHR-HCS-D13-04-006]
The views expressed are those of the authors and not necessarily those of the NIHR or the Department of
Health and Social Care.

Conflicts of interest
All authors declared that there are no conflicts of interest.

Ethical approval and consent to participate
Not applicable.

Consent for publication
Not applicable.