Public & Patient Involvement (PPI) in Research Activities

This year, as part of the GOSH Charity annual National Funding call, we have introduced a pilot scheme to offer support to our researchers with their public and patient involvement (PPI) activities.

An opportunity

PPI is an opportunity for patients, families and members of the public to be actively involved in research projects, providing valuable and novel insights and helping to shape the research focus and design.

This scheme aligns with the Charity’s new Organisational Strategy for 2021-2026, which aims to amplify the voices of seriously ill children and their families through research, care and advocacy.

In order to provide this support to the applicants of this year’s National Call, we are delighted to announce a working partnership with Genetic Alliance UK and with the Patient and Advocacy and Engagement arm of Congenica Ltd.

The aim of this new partnership is to provide specialised support and guidance for applicants to help them develop new and effective PPI plans as part of their research projects that will be mutually beneficial to both researchers and patients.

Together, we aim to help researchers with their PPI plans, answering any specific concerns or questions that they may have by putting them in touch with experts within the field and signposting to useful resources.

The partnership also aims to raise awareness of the benefits of incorporating PPI into research plans among GOSH Charity funded researchers and more widely across the paediatric funding landscape.

The pilot includes offering a webinar, welcoming all applicants to the call to attend (more details below) and informal 1:1 consultations for successful applicants funded through our 2021/2022 call, with further opportunities anticipated after this initial pilot scheme period.

GOSH Charity and Genetic Alliance UK PPI Webinar

We were extremely pleased to host the first webinar of the partnership on 15th September 2021, to which we invited all researchers that had submitted an outline application to our 2021/2022 National Call.

Dr Charles Steward, Patient Advocacy and Engagement Lead at Congenica Ltd chaired the webinar, with speakers that spanned a wide range of expertise and experience.

The webinar addressed the benefits and experience of PPI for lab research with some shared top tips; a first-hand account was given from a parent living with rare disease, and her experience taking part in PPI activities. The webinar also included an overview of Priority Setting Partnerships which identify high priority research questions through consultation with patients, carers and clinicians, and which are a valuable resource for academics planning new research.

“It was a pleasure to be involved in this webinar, which is the beginning of what promises to be a really valuable initiative. The benefits of meaningful PPI to research, research teams and PPI contributors are legion, and I am delighted to have the opportunity to work with GOSH Charity and Congenica to embed support for PPI in the Charity’s research funding.” Dr Amy Hunter, Genetic Alliance UK.

We look forward to hearing back from the attendees on their feedback on webinar, and our applicants once this year’s National Call closes on the success of the partnership. We hope to

continuing working with both Genetic Alliance UK and Congenica Ltd to grow this partnership and evolve the scheme to support and develop more of our researchers within their Public & Patient Involvement activities.

For any further questions on this scheme or partnership, please reach out to the GOSH Charity grants team at